Aspies For Freedom

Hi I just saw this parents part of the forum and hoped that you guys could help so i have copied and pasted this here.  




hi there  

I joined this site last year when I was carrying out some research for university.  Since then my son has been diagnosed with High Functioning Autism but potentially of the Asperger type.  

Within 4 weeks of him starting mainstream education the teacher told me that he would need an assessment of special needs and potentially a statement.. .my parents who were very in control of everything at that point hit the roof and moved him and paid for private education! Thus he did not get any support until this year... 2008- 4 years later.  

I have been really beating myself up over many things.  Firstly my parents have blamed me for some of his negative behaviour from day one which has underminded my own confidence in parenting my son.  But last november 2007 I finally cut ties with them when their constant verbal abuse of me and of my son came to a head.   They would not accept that he had already been diagnosed with Aspergers by one educational psychologist (they even called this ed psych to tell him that there was nothing wrong with my son and that his problems were down purely to my own poor start in life and my parenting of him!)  

Anyway in september last year I moved him from the private school to mainstream again believing that he would at last get some support- how wrong was I?! The ed psych for that particular school came in to assess him and basically told me that he was controlling me and that he had attachment disorder of the ambivalent type... I strongly believe this guy simply doesnt believe in autism/aspergers and he gave his main reason for this  particular diagnosis was that my son behaves differently at home and at school (personally tho i THINK my stupid parents had been in touch with both school and ed psych as they knew he was being assessed again! -)  ---- im sorry but my son was having classic meltdowns EVERY night after school because he couldnt do his rocking, his sucking, his flapping, his twirling, and his neck tics and was being picked on in the playground and totally misunderstanding other children in "rough and tumble" play.   He would come out of school and would tell me after about 3 hours of rocking, spinning, tantrumming about what had happened at school.  

The school were totally unsupportive even tho they had put him in a year 2 class as a year 3 pupil.. and the cruch came a couple of weeks ago on parents evening when I was NOT ALLOWED to talk to my son's teacher alone, the SENCO (who I believe is two personalities) HAD to be there... I took a friend for support to make sure I wasnt misinterpretting stuff due to my own emotional ties with my son... and I mentioned the play time stuff, the meltdowns, and u know what that woman said (senco this is) she said "he must be lying, we dont see that behaviour in this school and he must be doing it for your attention!"   my mate who is so placid actually took her to task on this rather than me having to get uppety.... How the heck can my son make bruising on himself?! for attention?!!!!! God the little chap screams for a plaster if he gets so much as a scratch which doesnt even bleed!!!!!!!!!!!!!! argghhh!!!  I then pointed out to the SENCO who was clutching a recent letter from the paediatrician in which he asked why a child aged for yr 3 was being educated in a YR 2 class without a statement..... I asked her about this and she said (bear in mind this letter was received on the wednesday and the parents evening on the thursday) she said "well we think he can move up to the yr 3 class now, he has no special needs, no special educational needs and is now age appropriate and we will not do a statement for him!!"  
I went home and went to pieces... my friend and I had been treated as if we careless and abusive young single mums and we are both 32!!!! Anyway in the morning I contacted the LEA and told them I was taking him out of the school immediately... I also contacted my son's paediatrician who said "as far as Im concerned your son's case is cut and dry he has High functioning Autism probably of the Aspergers type" he also felt the school had a knee jerk reaction to being asked to carry out the statement process and that basically he didnt understand what the senco had a bee in her bonnet about... he has always complimented me on the way I am with my son and how well we interact together!

Get this part tho... when I phoned on the friday to tell this stupid woman that my son was leaving the school she said "we bent over backwards for your son, and do you think that we dont believe your son has Autism?!" well blow me I was nearly sick!!! How can he have "no special needs, no special educational needs" on thursday but yet on friday she tells me that they BELIEVE he does have Autism!!!!! What?!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  On another note.. this school have been very cagey about passing on his school records to me I am entitled to them as I am home educating but I feel that actually they are now covering their own inadequacies and perhaps contact that they have had with my parents!!! I went to the solicitor re this one and basically he is dealing with it!


Anyway so now I am technically home schooling my son with a view to getting him into a school that I do feel will actually support him.  We have looked around 4 schools now
the first I just thought NOOOOOOO! to
The second saw within about 5 mins His anxiety, facial tics, etc and basically she was already putting stuff in place to SUPPORT him and me!!!! I couldnt have been happpier and she assured me I wasnt going MAD!!!!!! Thank goodness
The 3rd school basically put me off immediately saying they couldnt meet his needs... this was said within 2.5 mins of him walking in the door!!!
The 4th school knew the 2nd school .. was lovely but said that the 2nd school was best for my son and when I asked about whether his work is "age appropriate" she said "NO! It isnt!!!" She also said I wasnt going mad and that she could tell that my son was on the spectrum as soon as he walked through the door!!!!!!!

Ok so I know Im not going insane... Do  you guys have any idea of WHY a school would behave in the way that the school I just took him out of has?! Were they really that negligent or did they simply not believe he had any issues? Interestingly enough if he had remained in year 2 until september he would have had to take his SATS ... moving him to yr 3 immediately would have got him out of that wouldnt it lol or am I being paranoid and cynical?!!!


Its been a rough ride really and I am in desperate need of support.

On another note one of the main problems I have with my son is that he wont be alone.... for instance he will not stay upstairs when i am downstairs, he will not toilet alone, he does not dress, he has issues with sequencing and he will not sleep alone... in deed if he sleeps atall!!!  He is on some medicaton to help with sleep and this does help but the next day he can be quite aggressive with this.  
Does any one out there have any tips on how I can  help him to feel safe ?   He explained to me that when he is alone "the room moves around, the shapes and shadows happen and it doesnt make any sense- it swirls"  
He is also currently being investigated for possible dyspraxia and I think they will probably also look for epilepsy as well.  

Please can someone here give me some support.. i feel
angry my parents undermined my confidence
angry because I KNOW my parenting HAS NOT caused his behaviours
mostly tho I feel confused and need some support
I ll probably need a hundred people to say "No your not mad, your son does have ASD and NO its NOT your fault!" before I ever believe it entirely.

thank you so much for reading this I know its long winded.  

love

Rosie

You are not mad,your son  does have ASD, and no it is not your fault.
You are doing the best you can for him.I don't blame you for being angry at your parents.It seems they choose not to learn the truth.Blaming the parent is still easier for some to accept.They are looking for someone to blame.Something curable.They think they can fix him if they get rid of the reason he is ASD.Sad that they cant accept him and just let him get on with being aspie.

Why would a school behave like this - - probably for much the same reasons my son's school behaved like they did. They didn't know about or understand aspergers / autism. Also maybe your mum did ring - and they might have made up their minds that they believed her. Some school teachers (from my experience) can be ignorant, they think they know it all. A kind of "we know best kind of attitude - and you are just a mum - what would you know. We are the experts". But I don't understand why they didn't accept the medical diagnosis.

I was considered to be an over anxious and over protective mother. My son broke down terribly in his teenage years - extremely suicidal - due to a very damaged self esteem caused by years of trying to cope within the school system.

I admire you very much for working so hard to help your son - you recognise and seem  to understand his struggles well.  In homeschooling your son you have rescued him. This will help him to grow up in a safe environment. He needs a safe environment to prosper.

In regard to the feeling safe.  Try to do what he wants you to do - if he is feeling scared - do your best to respond to his stated needs. Also use positive reinforcement. Tell him how safe he is - explain to him how safe he is and how you will keep him safe.
I remember my son not wanting me to leave him at bedtime - I gave him a blanket and I told him the blanket was a mummy replacement. I told him how lovely and soft the blanket was and how the blanket loved cuddles. I told him the blanket would keep him safe.
Eventually the blanket was broken down to rags but he used to keep a piece in his pocket and take it to school. He would have his hand in his pocket holding onto his blankie.

I think you are a fantastic mum - you have done everything you can to help your son, you have believed in yourself and not listened to dumb teachers who didn't know what they were talking about. The ultimate of it all is that you are homeschooling.

I find the behavior of blaming people for conditions is the usual for people that have trouble accepting things.

Chosen 1 , Lucie 1 and The Zach thank you all so much for your support.  

Chosen 1 "You are not mad,your son  does have ASD, and no it is not your fault." Thank you!!! I should print this and put it on my wall just to remind me!

Lucie 1 it sounds like you had such a tough time with your son's education and I was so sad to read about it.  It must have been awful time for you all.  I really like your idea of a blanket and allowing him to take something out with him ... from day one he had a bear which he used to take EVERYWHERE with him.. it was my parents who put a stop to that but he still has it even now at bedtime and if we go to stay at someone's house together he takes his bear.  He also sucks at his clothes constantly and chews his sleeves.. when he was made to stop doing this (my parents again) he basically developed an upper body tic instead.  Im wondering if they have actually made a lot of problems for him by telling him "girls wont like you if you do that, you look silly when you do this, Mummys Boy!" I think they have made his attachment to me far more severe actually on reflection.  I havent actually decided to keep him home schooled forever I am just doing it in the meantime until i find the RIGHT school for him and hopefully we have found that.. the school are also saying he can come home for lunch which will at least avoid the playtime bullying and also give him some space in the middle of the day to release himself.. eg spin flap and twirl if he wants to but hopefully if this is the right school he will be freer to just be himself anyway.  Thanks for your help and for your kind words that I am a good mother! Thank you

Hi TheZach - I agree with you but my parents were totally in denial that any such "condition" even existed and refused to believe that he may actually have a biological condition that was external from ANY other influences... ostriches the pair of em!!!

Rosetta,
I can relate, my mom in law did not believe there was anything going on with my son.  Even when he got dx'ed she told me it was only because I told the doctor there was something and they dx'ed him to keep me quiet. Crazy I know.
Also, perhaps you would consider trying melatonin for your son to sleep. My son has done great with it and he is a happy pleasant little boy. Just thinking maybe the med is making him agressive.

I think we can all relate in a sence.  My mother continuely blames me for her problems, her boyfriends breaking up with her, the divorce of my parents, etc.

Needless to say - im not close to my parents.  I dont wanna be around that attitude.