Aspergers Syndrome

[vickey]

I am new at this first time, please bear with me. I have two boys one (7) diagnosed with asd and the other (9) in the process of seeing a psychologist who is not very willing to give diagnosis. I am looking for help as signs of asd in eldest is now extreme, violence, ocd and panic attacks.

Anyone have any similar problems or any advice would be gratly appreciated.

mrsforgetful & jimjams
Thank you both so much for your advice....I wouldnt have known any of the info if you hadnt told me.
Amazing that all this is from people i dont know and not the so called professionals!
I`m going to look at the website about allowances in a mo.and ring them tomorrow.
Ds had a bit of upset at school when he hurt himself and the other kids in the class laughed at him which of course led to much worse....does anyone think if they knew about his problems they would be better toward him?
Thanx again for the advice will keep you posted!!

Jimjams, agree totally about the quality of the units etc which , privately, I seriously doubt is any good. My yardstick is, how much do children LEARN? I don't mean calculus! Whatever their level is, they should be learning even very slowly and that could be letters and numbers or riding a bike and animal sounds, whatever. Other parents have told me that in many special schools learning is not their target, they are more concerned with occupying the children. Some parents are more than happy with this and many are desperate for these places. In our case we were actually delighted that there was no provision but in public we have to be upset about it and we do have to realise that not everyone is like us.
Re DLA, we originally got middle range for care, partly because my son was young (just over 2) and also because I didn't do as good a job as I could have. A couple of years or so later I made a project of trying to get higher care and moblity and, after some toing and froing, got both. We therefore have a blue parking badge. You should see the looks we get sometimes as everyone is under the misconception that they are only for people with restricted mobility. THis is not true and there is some clause or other that states this. I've got further info if anyone wants it.

I'm sat here .... trying to think of how to say what i want to say!!!Basically every day i visit this site ...not just to see if i've had a reply but to also read how everyone elses day has been- i've never had a great memory (hence my nickname...my boys named me !) yet each time i log on i read the messages and see the names and feel just like we all meet up for coffee!
Apart from my son's obvious difficulties at school my real pet hate of him going back to school tomorrow is to do with me..... and not him!! I HATE STANDING IN THE PLAYGROUND WAITING FOR MY BOYS AND FEELING SO DIFFERENT TO ALL THE OTHER MUMS- I FEEL SO ISOLATED- OTHER PARENTS DON'T KNOW WHAT TO SAY TO ME ...I WOULD LOVE A CONVEYER BELT THAT SAFELY TOOK THEM TO AND FROM SCHOOL .... SO THAT I DIDN'T HAVE TO STAND THERE!
these feelings are due to the fact that despite the school having a high SEN % - there is no 'self help/support'.....so now for what i want to do... Just like they have regular workshops etc for 'normal' literacy maths etc.... i want to get sessions going for the parents of kids with SEN- not only will we get to be able to assist our kids better with school work ...but we will get to know EACHOTHER- and the playground won't spook me anymore!! I also thought about a newsletter- so we can pass on all our tips/websites/books/strategies etc.
ANYONE DONE THIS B4????!!!!!
JIMJAMS...REF A MESSAGE FROM YOU A WHILE BACK... I don't feel ready to set up a proper support group yet BUT KNOW YOU HAVE DONE THIS YOURSELF....CAN YOU OFFER SOME MORE OF YOUR INSPIRATION!!!
THANX!

I know just how you feel mrs forgetful !
My ds was adamant he wasnt going into his class today and was still stood in the playground when everyone else had gone in.
It took me and a teaching assistant to persuade him but he not happy bunny.
Now i spend the rest of the day worrying about how hes getting on. ROLL ON HALF TERM.
Re: support groups ive been trying to ring one this morning which is run by local council and surprise surprise theres no reply.... good idea to set one up yourself - im sure it will be much appreciated by lots of other mums.

oooh no- mrs forgetful I defintiely did not set up a support group! The trouble with setting up a support group is you get people ringing you at 9.30pm on a Friday evening asking for help- and I've got too much to deal with myself without taking on anyone else's problems! What I did do was run a few coffee mornings- I put a little piece in the local paper- and lots of people turned up. I made it very clear when people rang though that it was just coffee mornings and I wasn't running support group. My idea was that the best support comes from friends in the same situation as you. (see nightmare social occasions thread under behav and develop for more on that hot topic!) I thought that coffee mornings would be a way for people to meet others in the same situation as them and to start to socialise together away from the group. Just like NCT coffee mornings for new mums- really just a way to make friends. I haven't run one for ages- mainly becuase I've had too much on.

I did still get people ringing up at annoying times asking for help for their daughter in basigntsoke (about 300 miles away from where I live!). I advertised my mobile number so just turned it onto voicemail when I didn't want to take any phone calls.

Davros- aggree about the learning thing- this is a point made in that book I keep quoting from as well. I think that's waht annoyed me so much about the communication programme provided by the SALT- he wouldn't actually learn anything from it

well....things got WORSE today... i actually managed to get both my boys to school by 8.40 !!!! only to find that they had COMPLETELY altered the playground (segregated areas with fences for different ages etc) and in addition instead of the kids going straight into clas as they have done eversince my eldest started they've decided that it's best if children line up as soon as they arrive infront of class and teacher calls them in whilst 'being on hand to chat to parents about any concerns'
EVERYTHING about this stinks as havine kids with SEN tends to mean YOU NEED to take child in/put lonchbox where they will find it/assist haning up coat and bag....etc!!!! Also the fact that they expect parents to stand outside in the playground to discuss concerns....how can i do that with what will be 3 boys at school and 3 teachers i need to talk to standing in 3 areas of 2 playgrounds! Their answer is to make appointments to discuss any issuses(!)...now that may work with a 'normal' child....but doesn't work for my child/ children(?) on the ASD who have so many 'odd' little moments which require me to mention to school....eg could be an activity planned will cause probs etc so need to suggesst strategy to teacher to help smooth over- now it's no good for me to have to arrange an appt for the next day etc!!!
Finally apart from again how this impacts me....can you imagine how my aspergers son reacted to fences where there had never been any? and not being able to go straight in class (he loved this B4 as if we were early enough he'd be able to get into class and put his stuff away and lunchbox on trolley- whilst the others were still playing games outside- now it looks like we'll have to start every day with his worst part of his school day-the playground (the school have previously limited his time outside after i moaned so much ...but now he's VERY UNSETTLED AGAIN!
FINALLY!(PART 2)
my 6yr olds new teacher's reaction to his demonstrating 'echolalic' type behaviours in the holidays (ie after i say 'tidy up leigh' he will say 'tidy up' is that he is 'mimicking me'....and this teacher used to be a SENCO!
there is a great difference between a child being cheeky and mimicking a parent and a child 'repeating' what they heard.

vickey, you seem to have got lost in our diverting of your thread. How are things going?

Mrsforgetful, sounds terrible! All things that make sense to us but no-one even considered any impact on any SEN children, never mind the others too! I think you need to make an appointment with the head asap and write down all your concerns beforehand, as you have here. What a dumbo not knowing what echolalia is. Don't any of your kids have LSAs or extra support? This is too much for you on your own. Several of my friends have kids with LSAs and its written into their statement that they must have support at hreak time, lunch time, transitions etc (doesn't mean it always happens and LSAs get sick etc). Can only hope for you that it improves, how bloody stressful!

THANKS DAVROS! AND THE WORST BIT IS THAT I DO NOT EVEN HAVE MY HUSBAND BEHIND ME- HE STILL CANNOT ACCEPT ASPERGERS ....I THINK ITS COS HE HAS IT TOO (MY STEPSON FROM HIS 1ST MARRIAGE HAS IT!) AND I'VE BEEN THINKING ABOUT VICKEY TOO!

Mrsforgetful - how can schools be SO dumb? Ours has this lining up obsession too, and I've said several times that it's the worst thing in the world for ds1 (and for me - other parents etc as you describe) but they don't seem to listen. So on bad days I just march into the class with him anyway.
We had a joint birthday party for dd1 and ds1 at the weekend - I was dead nervous about it, and thought that none of the boys ds1 invited would want to come, but loads of them did, and the party went without a hitch (I think because it was all v structured and the entertainer had told us exactly what was going to happen and when, so ds1 felt quite in control, and he was on home ground).
Going back to the question of telling other people about the diagnosis - I have found it makes the playground less daunting for me - you can be met with ignorance, but even then there's usually some curiosity, and empathy too. I find if I tell people he's now getting extra help in the classroom they stop saying things like 'oh well, that's boys for you etc'.

I strongly believe in telling people about the diagnosis but then my son is VERY ASD!! I've seen the pressure and misery trying to keep it a secret can cause. Each to their own though.

I noticed all the lining up at the practice day. Mind you ds1 showed his displeasure with lining up when he whacked his teacher round the face.

mrsforgetful- have any staff at the school had any ASD training (I assume not if they've never heard of echolalia). Sounds like they need it. If you could get him statemented that sort of thing can be specified.

in ages

OOPS!!!!!
my 4 year old somehow managed to delete the whole message that i've just sat her for 20 mins typing...except for 2 words!!

to summarise- a referal has been made to my EXCELLENT health visitor to come and spend some time with me and the boys to hopefully then be able to support me in my pilgramage to 'prove' middle son has aspergers too/recommendations for Ed Psych/statementing for my eldest at school/and as i am certain that my 4 year old is 'at least ADHD' and atarts the same school on monday...i'm dreading the ...'can i have a word with you about your son's behaviour at school today!' type greetings from the teacher!

so i feel a bit better- however i hope that my mood improves as i felt fine all the holidays despite having to manage the 3 boys...i'd still rather do that than go through all this school hassle!! (this home education idea is very tempting!)

Just reading the last few messages ive just realised why my ds wont go into class with the others....the lining up!! Although hes not keen on going in anyway he will with some persuasion when all the others are in and settled.What is it with schools? I too have had major problems with dh not accepting the diagnosis. He refuses to tell anyone and still treats ds as if hes being naughty.It infuriates me as it sometimes undoes all the work im trying to do with him.
I think it must be an ego thing....
Anyway first week at school over hooray for the weekend!!

my husb will tell them to 'start eating' (when they've already ate some food) they then say 'i am' (he then says 'don't be cheeky) I THEN SAY 'come on,CARRY ON eating'...and they usually do just that....NOT START EATING.....BUT CARRY ON!!!!

OR......my son will be half on and half off the chair-husb will say 'sit down!!!!' he says 'i am' husb says'no you're not' ....I SAY....'SIT DOWN ON THE CHAR SO THAT BOTH YOUR LEGS ARE IN FRONT ETC...'

OR WORST OF ALL... husb will never warn them that he's taking them out so he will suddenly switch t.v off etc and say' come on we're going up nanny's' etc- we then have world war 3-whereas i give them 30mins notice of any interuption to their activity and then simply remind them at 10 minute intervals .

etcc......

my undiagnosed ds2 has stopped the echolalic repetition and started 'stimming' by walking around dragging his toes behind him....not that these things are connected...just wondered does the echolalic come and go- he was doing it 5 or 6 times a day all the school holidays- feel now his back to the general routines he likes at school the repetitions have stopped at home- and can a child switch around different things which appear on the spectrum- or would a child be doing all the things he does at various times of every day- he appears to 'enjoy' something so does it till he starts a better 'thing'- i am unsure of all this as my 9 yr old aspie tended only to try and spin EVERYTHING and i never noticed echolalia/flapping etc with him

i have been reading all this is my first time today ihave just joined my 6 yr daughter is having problems she has complex partial seazurse and this week has a nurse in school with her while they have her wierd ip to record her brain as in school she goes in to a drunk like state and falls asleep yet without the drug meletonin she carnt sleep strange i have always felt that their was somethink different about her i have another 3 she is a twin she has just been asessed at 4 rys yet is 7 in november she does things in order and often says she shouldnt be born could someone please explain more to me about aspergise as i am sure she has somethink on these lines she is just waiting to be statmented as she can not cope in her class