Help, I'm drowning!

[thebuzzer]

 

I found this site some months ago, but have not had access to the internet for a while now. I will give some background as I suppose I am new again.

 

I am mum to my son who is 6 this week and was dx as Aspegers in March last year. We knew from age 2ish that he was having difficulties socially. His language developed very well, he was speaking in fluent sentances by age 18mths and this has not changed. When he first went to nursery the excellent owner spotted difficulties within the first 2 weeks. She thought at first he had spatial awareness problems, but then said he was showing asd signs. I agreed, my mum has worked with SN children at a residential school for 20 years and some of these children are on the AS. I too recognised the signs and in a way was relieved that I knew what we were dealing with. The Child Development Team have been great, as have the S&L therapists.

 

My LA (West Sussex) only statements children band 7 and above. I am going to tackle the statement process in the next few weeks if things don't improve at school and will be back on here for advice.

 

This is my rather lengthy problem (sorry it so long - thanks for reading !!)

My son is in Year 1, he has 2 teachers who job share. One of which is new to the school and her attitude to my DS and the other children leaves a lot to be desired (think the teacher in Matilda played by Pam Ferris!) I have spoken to the HT after she shot me down in flames when I was getting DS to sit down to listen to the story (I help on a Wednesday pm). He had refused to sit on the carpet and I went to say "you have a choice you either sit down and listen to the story or we have to go out" (this is what this teacher wants me to do it DS doesn't comply ) I got as far a "you have a choice " When she shouted over me "He has no choice he sits down NOW!!" I was fuming. DS crumpled and cried she told him to stop immediately. Another example, again witnessed by me she asked DS to tidy up the role play area - just "tidy it up please" DS said "it is tidy" (he needs specific instructions ie "please put those teddies in the box etc" she then shouted at him "tidy up! tidy up! tidy up!" until he started crying I had to take him out. She is awful and says DS knows exactly what he is doing. He will lash out when she man handles him out of the class if he makes any of his Asp noises - generally humming the star wars tune quietly.

 

The problem is he has one to one support from 5 different TA's only one of whom is qualified - an ex teacher who is now a TA. They have no experience of ASD, no courses on TEACCH or anything. The SENCO is newly appointed and clueless - she was his reception teacher and has no empathy for SN children. The only advice the school are following at the moment is from the LSA of another autisitic boy who is in year 5. She is qualified in Lovaas and has been with him since he is 2. The progress he has made is amazing, he had no speech and bless him is still in his own world unless kept motivated by her. She has some great ideas and has helped DS at times, but is often called in after the fact - i.e when he is saying to the teacher "I am ignoring" when he doesn't want to do something or he says "just forget about it" he says it to us as well. We deal with it. His hurting has returned he is lashing out at other pupils and staff (he was formally excluded on Tues for the pm, I asked for it to be formal as they have twice informally and illegally excluded). They are not bringing in the inclusion officer from the LA who has been brilliant in the past and recommended social stories, the won't do them as the LSA trained in Lovaas doesn't believe in them. She has said to me last week and then to the HT this week she believes his behaviours are learnt and not Aspergers. I am so hurt and so cross. I have supported them through everything. They are ignoring that he has Asp and that he sees things differently and blaming us really. I have telephoned his Comm Paediatrician and we are seeing him on 3/4.

 

I have also seen and independent S&L therapist who is very experienced in ASD a few weeks ago, she comes to my mum's school for the children there and was appalled at how they handling DS. She says you cannot separate the behaviours from Asp and that if DS stress and anxiety levels are up he will lash out and non comply. Mum is going to speak to her on tues when they are back at school.

 

I feel so let down and hurt. I just want the best for my DS he is a loving, bright and kind child who finds school very stressful. Oh the other classic from this LSA is she told the HT that the key to DS's behaviour in school is the consistency between home and school - what a cheek, he has fantastic consistency at home, she even criticised us that he is an only child and that is to blame, that he gets lots of attention at home and wants it school too - i felt like apologising for loosing the last 2 babies i have been expecting in the last year!!!!!! I am not a nit wit I know how to raise my son without spoiling him, but he has Asp and is egocentric - for want of a better descripition.

 

So sorry it is so long - I have more to say, but don't want anyone to fall asleep.

 

Any advice would be so welcome, I don't know what i would do without being able to vent on here and reading other peoples posts.

 

Thank you

[justamum]

He will lash out when she man handles him out of the class

 

Erm she is only allowed to do this if he is danger to himself, or others and then only restraint for the safety of himself or others. If she does it at other times this is an assault and an offence!

 

If you have witnessed this assault then put in a formal complaint and see a solicitor. She is NOT allowed to this.

 

As for the rest of your post...it sounds so familiar to me, and I expect others, it could be my sons story. I now home ed as I got feed up with the !

 

As for trying to make you feel guilty and inadequate, this is the lowest from of abuse to you and an insult!

[bid]

Welcome back to the forum, TB

 

There is so much I want to say about your post that I don't know where to start...I feel so frustrated and on your behalf!!

 

So briefly...big bugbear about 'professionals' (i.e this LSA, the classteacher) dismissing the dx of a consultant paed...when did they suddenly qualify in paediatric disabilities??

 

And Lovaas...well, this is ABA by another name as far as I'm aware, and I have pretty strong feelings about that intervention programme. Personally, I wouldn't set much store by a programme that means the child essentially can only work when motivated by one particular person...not exactly a well-rounded outcome, is it?

 

Got to dash as supper ready, but just wanted to send some support <'>

 

(Sorry this has turned a bit ranty...I have AS myself and my head is a bit all over the place at the mo which means I'm a bit stuck for expressing anything very coherently )

 

Hopefully someone more articulate will be along soon...

 

Bid

 

Oooh, and just to add, when my DS was the same age, the HT of his primary school told me it was all my fault because I had got remarried and had another baby...so you can't really win, can you!

Edited March 22, 2008 by bid

[Clare63]

Hi there and welcome abck to the forum.

 

My goodness you have a lot going on there, its no wonder you feel so hurt and let down, afraid I don't really have any advice right now but can empathise, we too have had the "only child" thing thrown at us and like you say when you have lost other children this type of comment is even more hurtful.

 

A statment I think is a priority and perhaps in the short term outreach should visit the school and give them some much needed training.

 

<'> <'> <'>

 

Clare x x x x

[westie]

I am sending you lots of hugs what� a load of s""" they are saying about only child thing - and am so sad you have lost 2 babies in such a short space of time� They are being very blunt and so not understadinng� (to put it most mildly!) and I really feel for you. TBH I think the first teacher you mention is better and the second needs educating in SN's as she is not very understanding or sympathetic. And that is terrible most especialy for your child

X

Edited March 22, 2008 by westie

[westie]

also want to day that with first child I felt like I was doing something wrong - even report said he rules the roost esp. with me and the help they offered me was a course which was designed to help you bond with your child - as they said they thought I had not because I worked full time. At end of 12 wk course which I attended for 10 of 12- because I had car crash accident towards end of it - they wrote a letter to paediatrician detailing all his unusual behaviour and asking him to assess for ASD.... and these were experienced CAMHS team who dealt with AHDD and mental health issues...

Edited March 22, 2008 by westie

[thebuzzer]

I am sending you lots of hugs what� a load of s""" they are saying about only child thing - and am so sad you have lost 2 babies in such a short space of time� They are being very blunt and so not understadinng� (to put it most mildly!) and I really feel for you. TBH I think the first teacher you mention is better and the second needs educating in SN's as she is not very understanding or sympathetic. And that is terrible most especialy for your child

X

 

Thank you so much for all your replies and words of support, they mean so much.

 

I am not going to let them get me down. I will fight for my son. On Tues I am ringing the NAS to see if they can recommend an independent Ed Pysch to assess DS. I am also going to speak to the Inclusion Officer from my LA and detail my concerns to her. I sat down yesterday and wrote out all the things I am concerned about and incidents that need logging.

 

Westie, I recognise the disorder that your eldest suffers from. I have read about this online. Would you mind telling me more about what behaviours your DS exhibit(s/ed). My son tries to rule the roost and I thought this is was his Asp, maybe there is more to it if you see what I mean.

 

Bid, I have really looked into Lovaas this weekend, great description on the NAS website and I too am concerned. I am not saying it doesn't work, I can see from the boy in year 5 he has made amazing progress. He was completely non verbal, but still has very stilted speech. I don't want this intervention for my child, I agree with the way that the LA approaches ASD. That is more TEACCH and PECs, social stories, comic strips. Letting the child have somewhere safe to go to calm down when they feel a meltdownn coming on (DS has started taking himself to his room when he is cross without any prompting from us!). I mentioned DS should have somewhere to go and they said they don't have the resources. They just want him to fit into their 'box' of what is normal acceptable behaviour! What about the SEN Code of Practice that they have to make reasonable allowances!!!! I will keep you all updated.

 

Take care Clare xx

[pookie170]

Yipes Clare, I left a reply on your other post but I should've read this first- got it topsy-turvy again!

 

Your son's school doesn't sound particularly supportive/empathetic to kids with SENs.....thats so sad and unneccesary. The way they're handling this is unnacceptable, and as for trying to make you feel bad about yourself, well that below the belt.

The LSA cannot use Lovaas on your son without your permission and I have to say that I'm utterly appalled by the way his newer teacher is reacting to him...you DO NOT simply shout a command at a child until he is reduced to tears!

Justamum is right, they cannot manhandle a child, but the use of recognised restraint methods are acceptable IF your son may injure himself or others through his behaviour. Lordsakes, my son attends a local behavioural unit where they have recently ditched restraining-and all the kids there have moments where they lash out! As does my son, but they've helped so enormously that this is almost a thing of the past. More usually a verbal thing now.

Get a headstart on researching local SE schools, there may be another establishment nearby where your lad would be welcomed and could flourish, cos it sounds like this lot need a kick up the bottom!

 

Have a hug, it's all I've got im afraid, but I am seething on your behalfs!!

 

 

Esther x

[justamum]

the buzzer be prepared to be 'asked' not to help out any more...but stick to your guns.

[frazzled]

Hi

 

This all sounds so familiar. DD aged 5 is in Year 1 with teachers and LSAs who have no training in ASD. Although I can't fault them for caring (unlike your teacher who sounds like an old bag who shouldn't be anywhere near children) we have come up against a system that is just not working so as a family we are seriously looking at home ed there being no alternative school. We have pulled her out of school for a period before in reception year when the teacher was unacceptable for much the same reasons you have outlined in your post, basically he was causing anxiety and then blaming DD's behaviour on anything but school.

 

I too have lost two children, and yes I would also have loved for DD not to be an only child. But this does not make me neurotic or a mother with too much time on her hands (yes the behaviour has been blamed on me too!).

 

What I would be doing now is to diary all these incidents that you describe and going to see the headteacher. The statementing process is for the medium term, but you can't really afford to wait while this sort of damage is being done to your child's self-confidence on a daily basis. If the head can't take this on board immediately then I recommend that you look at other schools and home ed.

 

I don't think there is anyone on here who is kicking themselves for taking a child away from a particular school - but I bet there are a lot who are wishing that they had done it sooner!

 

Take care. This sort of stuff is so soul destroying to the whole family.

[justamum]

but I bet there are a lot who are wishing that they had done it sooner!

 

You can say that again!

 

Oh my sons behaviour is all due to me being a single parent and disabled, which mean I can't cope...apparently!

[Suze]

Big hugs to you the buzzer...............totally agree with everyones replies............I fear that the time may have come to start fighting back big time(it sounds like your starting to do this anyhow )...................you..........need to start building your evidence for a statement.........with all this stuff that the school are getting wrong.I,d start with a home school diary.................request that the school/lsa,s (that help him) right down about his day...........logging all incidents of lashing out.........crying ..........if he has to be taken out of class etc.It sounds awful having to record all the anxieties and negatives about your sons school day but a body of evidence like this will help (hopefully) in getting a statement.All correspondence should be recorded, ie if you need to communnicate to the head do it via a letter, then you have evidence of your concerns etc.........request that they communicate to you this way too.Keep your own diary for home use aswell.I,d get on board all those proffessionals who are sympathetic to your boys predicament and build a body of evidence that,ll get your boy the appropriate support he needs at school, be it a LSA that has ASD training or a placement at a unit or special school that understands ASD.

 

.................it sounds to me all you want is for the school to understand your sons ASD and his needs , sadly some schools just don,t get this .My son had a truly awful time under a particular teacher and a Head, and we had to fight to get some understanding, our LEA HAS A AUTISM OUTREACH team that will advise schools on stratergies to help autistic kids in mainstream, does yours have one?..............they helped me enormously .Best of luck hope things can get better for your boy, he,s only 6 and should,nt be treated like that, hugs suzex

[thebuzzer]

You can say that again!

 

Oh my sons behaviour is all due to me being a single parent and disabled, which mean I can't cope...apparently!

 

Thank you so much for all your replies I am so touched.

 

Frazzled, how alike our situations are, shame we can't home ed together! You are not in West Sussex by any chance

 

I am going to reinstate the home school diary. I was supposed to have a meeting today, but the school closed as the heating was broken. DS was so happy - as were all the other children. I am telling the school that I am documenting everything towards a statement. I am also looking into getting a diagnosis of PDA - Pathological Demand Avoidance for DS, I was pointed in this direction by another mum and the criteria fits DS even more so that Aspergers. I am seeing his Paediatrician next week and researching myself. If he does have it then the school have to handle things totally differently as it is in black and white how to support children with PDA. I will keep you posted.

 

My LA does not have an Outreach Autism Team, just the Inlcusion officer from the social communication team who is good and I have given the school until the end of this term, next week to get things in place and then I am asking for her to come in in the new term

 

As for not being asked to help, now the teacher gets me to do filing or displays out of the classroom and I leave him with his TA. Suits me as long as DS is ok.

 

Take care Clare xx

[westie]

Hi Clare

just seen your message, would say that James showed some AS traits as a youngster but not enough to diagnose (took 2yrs of assessments before diagnosis of PDA - if the SALT at the child development centre had not heard of PDA then he would have been diagnosed with ASD or PDD-NOS by a child psychologist at CAMHS) and when we completed the checklist for ASD we could tick "some boxes" but when we went through PDA checklist we could tick off every box! Now whether PDA

is separate/ related to/ same as ASD I am not sure but the guidelines issued by the ENC seem to work better than using guidelines for AS so think the distinction is useful, as before hearing about PDA I thought my son was unique and nothing would work!

 

He did not at young age mix well - except he used to latch on to one particular kid in a setting and then he could not cope when they did not want to play, or others wanted to play with them (this has been a feature of his behaviour since a young age to present although he has learned to be a little less possesive) this is one of the features of PDA - he can also take extreme dislike to people. They say PDA childrens obsessions (if they have them) tend to be of a kind of social nature......

 

J does not like circle time/ assembly/ supermarkets/PE even now,- at supermarket he always want to know "how long will we be" or. "how many things are we buying" - and woe betide me if I say 4 and then get 5!!!!

 

He used to line things up, cars, cushions etc. though not all time. He loved trains/ cars - small ones he can hold not big chunky ones.

 

His language was delayed thought he caught up all of a sudden about 3 1/2 and can sound older than his years sometimes

 

His play was (and still is) very directive - you say this, drive the car this way..... etc. A big problem with peers esp. when younger as they will not humour unless they are passive - which is why I think he used to latch onto particular children (who all seem to be more passive personalities)

 

He used to get upset if we drove a different way to his nannans because of roadworks etc and actually cry. Same thing if he expected something to happen and it didn't (like we went to see his great grandad in a nursing home where you had to press a bell on door but one day the door was open and he screamed that much we had to shut the door and let him ring bell!

 

He didn't (and I think still does not "get" sarcasm, and when angry his understanding of verbal communication is

He used to hate walking and would complain that his "arms were hurting" when he was walking to school. He hates being told what to do, so we have learned to ask in a roundabout way to get him to do things we want without making him feel out of control. This is key - indirect approach/ challenge (not reverse psychology usually) and a keenness to try out things again and again after a period as they may start working again

 

If you read about PDA they say main difference is the PDA child has surface sociability and are manipulative (a a horrid loaded word, but it does feel that way sometimes!) with people to avoid doing what they are told - they fear loss of control and will try anything. Usually they are not violent ways first - distraction, saying shocking things, incapacitating themselves throwing themselves under tables, making noises or ignoring and usually last resort is having tantrum and hitting out. In J's case I think he learnt at early age when his verbal skills were less that a tantrum or hitting out works well to avoid demands so he did that (less so now, but still an issue) rather than these other tactics.

 

He also had other phases such as once when about 4 would not wear short sleeve top/ t shirt for about 4 months. He chews his tops, bites toe and finger nails, curls up under his jumper, climbs in small cupboards, does not like wearing shoes or socks, prefers jogging bottoms to jeans.

 

If you like when I have more time I can PM you the checklist responses from one of the reports I have which may explain the PDA thing further and you can see if anything seems familiar to you.... we were lucky enough to get a referral to the Elizabeth Newsone centre when J was 7 to confirm diagnosis and get some answers and advice from the experts on PDA. Their assessment and reports were really good and it was nice to speak to someone who just knew about it all!

 

J gets on better with certain teachers (and then it can take a while of him pushing boundaries and them getting to understand how he works) and with support of TA who knows him he does better now, but if teahcer is out and supply teacher in or his TA is away then things do not go so well) so bearing in mind your comment of how your son can have upto 5 TA's this is really a receipe for disaster for a PDA or an Aspergers child!

Sorry its so long!!!