Eureka!

[jaffacakes]

So much to say, too little time. I've posted on a HE forum and it covers most of what I need to say (in italics below).

 

I only heard about Aspergers about 6 months ago and really need to read up. My son has had some interesting issues all his life, not wanting to sleep, gluten free since 12 months and yeast free from about 2 with mood swings that we can relate to Gluten, yeast and Benzoate intake, not milk or egg. He also has violent mood swings and has always been very headstrong. Also he loves rules, Chess, Backgammon, card and board games. Road signs, clothing care labels, doing things in the 'right' order. He has got himself into trouble in school as he insists that others follow the rules, no climbing up slides etc.

 

I know it's Aspergers, now I need to get the authorities to listen to me. Oh, he has seen the 'Head' Behavioural Physiologist in our area (Northwich) who has written in a letter "[He] needs to take responsibility for his own behaviour" I am going to sooooo enjoy writing the complaint letter back to her boss when we get the diagnosis.

 

I know this is what he has, no doubt at all in my mind.

 

 

Hi all,

 

We have just (Monday 1 Feb) removed our 4 yr old from school due to bullying. It's been a bit of a whirlwind although we were already having problems with the school.

 

It's a long story, sorry it rambles.

 

Firstly my son is on a Gluten free diet, the Head Teacher refused to accept all the GP and Consultant letters we had and we had to get a school Governor involved. The Governor's involvement instantly changed the situation and we put this down to a retiring Head (finished in December) - there didn't seem much point complaining further.

 

My son also has some speech delay and behaviour issues, he has almost caught up but still can't communicate to the level of his peers, some conversations are beyond him and he is likely to be non verbal with cuddling or lashing out if he needs to communicate.

 

We have been told of one or two incidents where he has bitten, but nothing more, the school has not come to us with any concerns (in fact they don't really tell us anything). However last week I received a phone call from another parent who explained that my son is biting more frequently. She also stated her concerns that some older children seem to be bullying the younger ones although she has no proof.

 

On the next day (Friday 29m Jan) I spoke to the Head (a new head teacher just started in January) about a couple of points.

 

We are waiting for this Head to arrange a meeting for us to discuss the next Development plan for my son which is now 3 months overdue. I also asked to see the schools Anti Bully policy - which she and the school caretaker could not find (!) I asked about my son biting and was told there were no issues other than the one which had already been mentioned.

 

At lunchtime I came back to school and while watching from my car I witnessed a 10/11 yr old boy elbow my son to the ground. The school is small and they had 1 football which about 10 of the boys age between 4 and 11 were trying to play with. The classroom assistant who was in the playground did not witness the attack, and did not accept my comments about this attack.

 

I hung around the playground for about 5 minutes, watching quietly, at which time the Head came out and invited me to her room. It seems I had 'intimidated' someone. I don't know who as the Head refused to day.

 

When I wrote this intimidation statement down for my own record this quickly turned into a meeting with witnesses called in by the Head. The Head then suggested that if I had concerns then perhaps I should take my son home for his lunch every day. I suggested this was exclusion which was strongly denied.

 

I then asked if I was allowed to see my son during the day which the Head commented "I'll need to check".

 

The Head stated that she wanted to take 'this further' and would 'speak to County'.

 

I may be a strong character, but I am not argumentative and not in any way intimidating (well I don't think so anyway, I don't shout but will stand my ground and ask difficult questions).

 

My partner and I have both spoken to our son over the weekend and the story goes much further, there are 2 boys causing problems whom he has named and my son won't tell the teachers as he will 'get told off'. All the reception class get a "buddy" but no-one bothered to tell us that my son's 'Buddy' had left school (more questions there) my son had no-one AT ALL in school he could get help from and was very upset.

 

So, we have phoned school and told them we withdraw our son - instantly the Head found time for a meeting.

 

We're all in shock, our son is very clingy and just seems to want to stay at home. We don't know where to turn and are relieved that we have some time as our son is only 4 and does not legally have to be in school until after Easter.

 

In the short term I could do with some help with social activities for my son. With his behaviour issues and whatever else has gone on in school he does not get invites from class mates. I'm in Cheshire close to Warrington and would welcome any group meetings please.

 

Our son is not super intelligent, but he is finding Reception work boring and often says he wants to do what the Yr 1's are doing. He is also a great lover of Chess, Backgammon and Monopoly, and Lego, he's currently working on a Technics buggy with an age range of 8-11. We feel that there may be some underlying issue, but are struggling to get very far with this.

 

Got to stop rambling, I think this very small school ('Good' by ofsted) has some serious problems.

 

thanks for reading.

 

Lynn

 

Added: PS I'm nowhere near the Norfolk Broads !

Edited February 17, 2010 by jaffacakes

[Tally]

Hello, and welcome to the forum.

 

There are many jaffa cake fans on the forum, so watch out they don't try to eat you!

 

I am an adult with Asperger's, and I work in a dry cleaners. With an interest in clothing care labels, maybe your son will too one day

[oxgirl]

Hi and welcome. Haven't had time to read all of your post, so apologies for that, good luck with getting the dx. I just had to pick up on one comment you made, though, if you'll forgive me:

 

I know it's Aspergers, now I need to get the authorities to listen to me. Oh, he has seen the 'Head' Behavioural Physiologist in our area (Northwich) who has written in a letter "[He] needs to take responsibility for his own behaviour" I am going to sooooo enjoy writing the complaint letter back to her boss when we get the diagnosis.

 

Hope you don't take offence, but my lad, who is 16, is still expected to take responsibility for his own behaviour despite his AS dx.

 

All the best.

 

~ Mel ~

[justine1]

Hi

Welcome to the forum. I have a six year old boy with a dx of AS.

 

Sorry to say I agree with oxgirl,unfortunatley AS does not excuse the behaviour.My son has been excluded twice (he is in year 2) and is now on half days at school because kids are afraid of him.I cant blame the other kids.Saying that I also know my sons needs are not being met so we are going through the process of getting a statement.

 

Given that your son may be advanced slightly academically and is having social problems you need to get a dx to be able to start getting him additional help.It is by no means an easy process and sure you will have a battle ahead but this forum is really great at pointing you in the right direction.

Has your son had an assesment for a diagnosis? If not my advice would be to go to your GP and express your concerns.

 

I think given your son is four(excuse me if thats incorrect) he does need to have clear explanation as to what is acceptable behaviour.Prehaps you can get out books with lots of illustration showing "good play" or even draw pictures together,I have only stared this with my son now wish I done it sooner.My son needs lots of visual reminders about nearly every aspect of day to day life,brushing teeth,rewards etc.

I realise he is having issues with bullying and my son has had the same problem with older boys,fortunatley the school were very quick to deal with this and separated the older kids from the younger kids.It may be worth finding out if prehaps the younger kids could play first and then the older kids later,I am sure if they bullying him they may be bullying others so the school need to resolve this.

 

Dont be shy to ask anything here everyone is most helpful.

Edited February 17, 2010 by justine1

[jaffacakes]

Very quick reply. Yes my son is 4, almost 5.

 

Believe me he knows what behaviour is correct - I am not a lax parent. I have found that the best way of stopping the temper is to catch something as quickly as possibly, often before other parents know that something is wrong. However I also recognise that as my son has not got the communication skills of his peers sometimes his behaviour is part of the communication he has, and it's part of the learning curve - all I can do is explain what is right and what is wrong, I will always do that, we have star charts which help and a time out routine too. He is good, but sometimes lashes out very quickly, often without warning. Obviously at school I can't do that ...

 

He can also have bad patches when he has gluten in his system (not often, last time was about Easter last year) and he literally glazes over, there is no point in doing anything at this time and all I can do is take him away and wait for him to calm or sleep. He's reaching the point now where he is getting too strong for me to do that though. Help? from anyone - Ha! not yet.

 

As for the professional comment - that was her ONLY response, no assessment, no suggestions, no questions, no advice, no help at all. Makes me wonder if she got her qualifications through the post basically GO AWAY. My son has written Behaviour Plans from pre-school and school, plus reports written by pre-school - she hardly glanced at them.

 

So, in answer to other questions, no assessment, not much of anything really, I've had a nightmare with the NHS from day 1. I've only just figured out the Aspergers issues and will go to the GP next week.

Edited February 17, 2010 by jaffacakes

[justine1]

Hi again

 

Just to say I was not judging your parenting,I know exactly what you mean as my son doesnt understand everything I tell him,for him to actually understand right from wrong I need to repeat things constantly and as I mentioned use social stories but with loads of pictures.So please dont take offense.

 

Also it seems the school acknowledge there is a problem,so they have a duty to help your son.He does not need a diagnosis for them to place him on Action Plus,so you need to make sure this is happening,and that all incidents(either him harming others or him being bullied)are being documented.If you feel theyare not supporting you,you can turn to Parent Partnership in your area,you can ask the school for the details or contact your council.I found my PP very helpful and understanding.

 

Finally when you go to the GP,try and make note of everything you find"different" about your son,best to have it written down as its easy to forget.I would also say its best not to say that you think its Aspergers,in my opinion,as they may dismiss this and not refer you on.

When I took my son to the GP,I did tell her I thought its ADHD,but she observed him while I was there and said she was certain its Aspergers,I had never heard of it or read up on it before that day.Even after his first paediatrition assesment I was unsure.It is a relief knowing what it is and being able to get some support for him now.

 

I wish you luck for when you go to the GP <'>

[jaffacakes]

Hi Justine,

 

No problems, I know it's difficult to talk about other peoples parenting 'skills' - especially over the web Sometimes I feel I'm too strict, it's difficult when other children are so calm.

 

Thanks for the hints about talking to the GP - they don't like people doing their jobs for them do they

 

I will write a list before I go.

[pearl]

Hello from a jaffa cake addict. I also know Northwich very well as all my relatives live there. Odds on you know some of them, I descend from two very big families!

[trekster]

Hi and welcome. Haven't had time to read all of your post, so apologies for that, good luck with getting the dx. I just had to pick up on one comment you made, though, if you'll forgive me:

 

 

 

Hope you don't take offence, but my lad, who is 16, is still expected to take responsibility for his own behaviour despite his AS dx.

 

All the best.

 

~ Mel ~

 

 

Even though we cannot forse consequences of our own actions?

[trekster]

Hello Jaffacakes

 

i find tonic water is good when i accidentally get glutened.

 

Alexis

 

[jaffacakes]

Hello from a jaffa cake addict. I also know Northwich very well as all my relatives live there. Odds on you know some of them, I descend from two very big families!

 

Hey! I'm in Marston, on the Warrington side of Northwich out in the 'sticks'. I'm not from this area and although I know a few people I've always worked before my son arrived and don't really know that many people.

 

It can be a bit of a struggle when you don't fit in (I will be second in line after my son for testing).

[jaffacakes]

I’ve had a very interesting conversation with Cheshire Autism Support today. Nice lady who sounded like their senior person says that Ross should not go back to school until this is sorted and that Welfare / school should agree – or at least can’t complain much, that we have enough evidence already to ask for phased transition back to school and help when we get there from day 1 and that the Common Assessment Framework (CAF – getting everyone to talk together) is the right way forward.

 

I could cry, if I had any emotion left, it's nice to get some positive response rather than the usual blank or disapproving looks I get.

 

P.S. Temper from my 'Help' post in General switched off about 5 mins ago, just went athough he is not completely happy. Still need help, but at least he's actually watching TV and has eaten some more dinner.

[jaffacakes]

I've updated Ross's Blog, which I'm keeping as an easy record since we've taken him out of school.

 

http://rosswill.wordpress.com/2010/03/08/birmingham/

 

As I inserted photos and wrote up what has happened today I wondered if what I have recorded from today might shed any light. He had 3 complete temper tantrums within 4 or 5 hours, all three were violent to the point of causing actual damage, although short lived.

 

Can I use this as evidence of his behaviour, or will people continue to say that he's 'just an active boy' as I keep hearing?

 

thanks

 

Lynn

[trekster]

Hey! I'm in Marston, on the Warrington side of Northwich out in the 'sticks'. I'm not from this area and although I know a few people I've always worked before my son arrived and don't really know that many people.

 

It can be a bit of a struggle when you don't fit in (I will be second in line after my son for testing).

 

 

North East

 

Hexham Branch

Newcastle & Gateshead Branch

 

North West

 

Cheshire West and Chester Branch

Cheshire East Branch (details to follow)

Furness Branch

Preston and District Branch

Warrington Branch (details to follow)

West Cumbria Branch

 

Yorkshire and the Humber

 

Calderdale Branch

Harrogate and District Branch

North Yorkshire Central Branch

Rotherham Branch

Scarborough, Whitby and Ryedale Branch

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=914&a=15502

 

[jaffacakes]

Thanks Trekster. I'm now in contact with Cheshire West and Chester, and I'm hoping that they will allow Ross into the Chess Club even though he's only 4 (he's beginning to find my game boring )

 

I'll see what other events I can get involved in, at the moment many options are closed as I have no child care and Ross with me 24/7. I already have Cubs one night a week and Mick is away during the week for the next few weeks at least.

[pearl]

I've just been on your blog. He's very cute

[jaffacakes]

Thanks, we think so too.

[Kathryn]

Very photogenic little boy; he seems to like having his pickture taken! Interesting blog too. Over a period of time it will be a very good record, for yourself and others.

 

K x