latest suggestion

[jenk1]

of my DS "condition" is that "its those tv programmes that u let him watch its not autism" and "since u have been told DS has AS/ASD u have let him regress, he never used to get away with the things that he does now" and "dont let him go to a school with a specialist unit-he needs to learn to interact with other NORMAL children"
when i asked why should he not go to a SN school that answer was "he,ll end up being bullied cos he isnt mixing properly with other children" this person who is extremely close to me forgets that we had to take DS out of school earlier this year for 2 months due to him self harming as a result of bullying, this person refuses to accept that DS has AS?ASD and that my diagnosis is incorrect cos psychiatrists dont know what they are talking about. I came away from this persons house feeling very depressed and even thinking did she have a point?

I have since slept on it and feel a bit better but this person is the one that i would think would support me and she,s not. It is making me very sad

Grr. It is unforgiveable that this ignorance comes from someone close.. . Deep breaths Jenk! I can almost handle this type of thing from nosy strangers now(not that my DS had an ASD but I still get lots of maddening remarks about his condtion).. but when it is from someone who should really know better it's much worse. What did you say to her/him?

SJ x

i said he isnt regressing its just that we understand what upsets him now and try to make sure that things like noises,bright lights are not around him and that when he is in a social environment if he wants to flippin go and sit under the table cos he cant cope with all the people and noise then thats fine, but i was told "he should try and fir in with everyone else because he,ll have to do it for the rest of his life" and " you should make him do blah blah" i said that when we tried to tell off in the past before we knew what the problem was he was a very depressed little boy and was always angry and im not doing it to him anymore.

Its all about appearances and how other people think with this person and i know because this person used to make me do things that upset me.

In their defence though they didnt and i didnt know that i had aspergers but even now the person refuses to give any "special" treatment to my ds and me and its not that i want any i just need this person to acknowledge what is going on in mine and ds life and not try to tell me that everything we are being told be the professionals is wrong..ooh ive gone on ..sorry!

YOU are the ONLY person who truly knows YOUR CHILD...and especially now you have the diagnosis for yourself YOU ARE THE EXPERT!!!

p.s...bet THAT person does not have AS or a child who is AS etc...funny isn't it how all the 'advice' comes from 'EXPERTS' who go home every day to their 'peaceful and tranquil' homes...eat 5 veg a day...get 12 hours UNINTERUPTED sleep a night...funny how they all KNOW just what would 'solve' our 'problem'...and that sums it up....they see our kids as our 'problem'.....

Here i go again...but THEY wouldn't say these cruel things if the child had a 'visable' disability.....however i know that having a visable disability brings its 'onlookers' too...

My mum 'blames' my boys for 'how i am'...however she refuses to accept any responisbility for making my childhood a misery...but that's another story!!!

this person who is saying these things is my MUM
i have tried to talk to her about myself and my diagnosis but she refuses to accept it. When i had PND she told me i was "bored".

She started the ball rolling a couple of years ago cos she suggested that my dad has AS.

It got me thinking about DS and i asked my nanna what my dad was like when he was a boy and she said just like DS.

It was DS school who asked me to refer him as they were picking up on things, even now my mum wont accept mine and my sons diagnosis, it makes me really sad because i feel a relief.

The other day i found DS ref child health record and i remember asking the HV,s DP,s to look at DS cos i knew something wasnt right, its all recorded in there but they said he was just a "lively " boy,.

Im resigned to not talking about it now with her because i just feel so upset, oh and by the way she fully accecpt that my sister has bipolar disorder-even though she,s not been diagnosed and that my dad has AS but me and DS dont have anything? i really dont understand that one, it must be something behind it but i dont know

YOU know what is wrong
You know how to improve
He is YOUR son
Does she accept you having as?
maybe she is feeling guilty over you?

Sorry to go slightly off topic but how did you go about getting yourself dx?

no she wont accept that i have AS, DH thinks she is feeling guilty, apart from this she is a really good mum, i dont know why she is being like this with me and ds

nikki i self-referred myself, if u look in archives under self-referral on 12 july this year i put everything down that i said to the gp,she wasnt very sympathetic about it but referred me on to a psychiatrist, do u know someone who u think is AS?

she is clumsily trying to make it better for you

she is obviously wrong, but she is reaching out for a normality and believes that what she says is supportive

how can she possibly understand, if you had signs of AS as a child and she sent you to 'normal' school and you turned out so incredibly high-functioning will she not obviously think that is the right way to go and be mistaken in her love and support

have you explained to her that you have found it a relief since you had a temporary diagnosis and that you are happy that he is just DS?

sorry but mums are like this

when i try to talk to about my diagnosis she refuses to discuss it, she wont accept it, she accepts i maybe right about DS but even with that she thinks its what he,s watching on tv or that me and dh are being too soft with him, your message has made me see her in a different light that perhaps she thinks she is making me feel better by what she says. Maybe i need to give her time, shes had a shock both her daughter and grandson within 5 months

I have suspicions about my dd2 and the more I read the more things I reognise in myself.

today i gave her the report from the hospital of ds,s assesment.
It is a very detailed assesment of what he was doing,saying,acting and at the end of it she looked at me sadly and just nodded so i feel that she does accept DS diagnosis now