Some advice needed please

[Sarah666]

Hi all

 

I found this site a few months ago, and apart from introducing myself, this is my first post.

 

This is such a brilliant site, I have learned loads since joining- so thanks to all of you.

 

I need some advice please.

 

J is nine, and started middle school in September. He has had been receving help from special needs since he started first school. Around Easter 2005, the school were becoming increasingly worried about J's behaviour, and the result was that for his last four weeks of first school, he was removed from class and put on one-to-one with the headmistress. He had different play time and lunchtime to all the other kids, apart from one, a friend of his choice who spent play and lunchtime with him. When this happened, I was not happy, but the school implied that the only other alternative was to exclude him

 

Well, he left that school, and luckily the new SENCO seems to be very supportive, she immediately told me that she did not feel that they had coped with his needs properly, and that the new school will do all they can to support J.

 

So, during summer hols, I saw our GP, asked for a referral to CAMHS, told the GP that the SENCO recommended. We also had a letter sent from a social worker to CAMHS, requesting the same.

 

Since the start of school year, I have been to 4 meetings at J's school. SENCO seems very supportive, I have been assigned a family support worker (?) who comes to see me at home to give advice, also J has had 4 out of 6 sessions of anger therapy with a behaviour therapist, who is assigned to the school.

 

However the problem i have is with the class teacher. I get the impression that she thinks that J is "just a naughty boy".

 

For example, on Friday after school, she called me in to see her. J has been swearing(not for the first time, i might add). Apparently hes not swearing at anyone in particular, just mumbling swear words to himself. Also he stuck the poppy pins in other children , and he had told the teacher that he accidentaly brought a book home from school. So teacher tells me she needs it back, and I tell her that I will return it.

 

The minute we left school, J said to me,"I dont have the book mum, its lost somewhere, and we were all going to be kept in after school to look for it."

So he said he had taken it home with him so the rest of them didnt have to be kept behind

 

Im finding J really hard to cope with at the moment myself, but I would have thought that teachers should be more informed.

 

SENCO thinks that J may be AS, I definitely do, but I have beeen told it may be up to 18 months before we see CAMHS

 

Is it "normal" for AS kids to start displaying really difficlut behaviour at this age? (9). My hubbie and I are at our wits end, and Im just worried that the support we are getting from school is going to stop. I've already had to see the headmaster about 2 incidents -

1. J pulled his trousers down in the playground and showed everyone his pants

2. J called another boy a racial name - this has been officially recorded as a racial incident(headmasters words)

 

J is becoming really unsafe near the roads, he thinks if there are no cars in sight , then its okay for him to walk in the road

 

J also keeps saying how much he hates me, I know he doesnt mean it but its still doing my head in. He also says he hates his life, breaks my heart to hear him

 

M is 7, and i dont feel that he gets enough of my time and attention.

 

Sorry for waffling on a bit, but thanks for listening to me.

 

Any advice greatfully received

 

love

 

Sarah

Edited November 7, 2005 by Sarah666

[DAS999]

Hi, I don't have any experience with child ASD my girlfriend is in her mid 20's and left school long ago. I do have a couple of ideas though;

Provide the school with information on ASD either through a training session or leaflets

Run through picture stories with your child ie; pulling trousers down makes people sad (sad face works well with my girl friend)

Try and get your child to express why they are sad once again pictures work well. My girlfriend often says she is sad when she means frustrated or scared or angy

Have you tried practicle things like brases on his trousers? Although this may make toileting may become harder

I hope some of this is helpfull to you and I hope other people can offer you better advice from their experiences

Best of luck

[Zemanski]

The demands of middle school are probably putting an awful lot of stress on your son and 9ish is one of those ages when the social complexities seem to increase for children and AS kids find they can't adapt and seem to get worse, both because they stand out more and because they are frustrated and stressed.

 

pin point any anxiety if you can - I keep a diary in outlook express calendar with incidents, times and dates and action taken, meetings, illness ....

it helps to spot patterns and is good evidence.

 

if you can get to the bottom of the anxiety then you need to see the senco about how to deal with it - one problem for Com was his form tutor, both inflexible and sarcastic, Com became terrified of him (nice bloke otherwise and other kids don't mind him), eventually we persuaded school to pull him out of the tutor group and he relaxed almost immediately.

 

cognitive behaviour therapy is more appropriate than anger management for most ASD kids - they need more input on recognising their feelings and the triggers and focusing just on anger can be quite negative for them.

 

if you are really worried about his health and safety - talking about dying is not on - then go to the GP and ask him to write to CAHMS to see if you can get things moving a bit faster

 

good luck

 

Zemanski

[Flora]

Sarah, I don't know any official statistics, but I do see that alot of kids are about 8 onwards when they get their dx. My son was coming up for his 9th birthday. I think, as Zemanski has already said, it's due to the changing responsiblities at school and to the child becoming more aware of their differences and difficulties. Can't believe how long you may have to wait for CAMHS appointment (all though I don't know why I said that as we had to wait along time too but not 18 months!!).

 

All I can offer is support, understanding and solidarity.

 

It's always hard on the other kids, particularly if they are still too young to understand. My 13 year old NT daughter is very understanding; but my youngest son who is also ASD (though not as bad as his brother) is in constant competition with my AS son for attention from me. It's hard, but you will get through it.

 

<'> Lauren <'>

[smiley]

Hello Sarah and Welcome <'>

 

My son is 6 and has been diagnosed with AS.

 

First thing is; When you saw your GP for the referal to CAMBS did he/she also refer you to a paediatrition/consultant who specialises in ASD? If not, try to get that arranged as a diagnosis makes a big difference to the amount of support you should recieve. My son also see's a speech therapist as part of the consultant 'team' and she really helps us.

 

I agree with Zemanski - the school sounds like they are really trying to help. But Anger management may not be all that helpful to a child with AS, the anger is usually a result of frustration over misunderstandings. Although trying to recognise and control anger is good - finding the reasons why he's feeling upset would be better.

 

His teacher sounds just like my sons Very frustrating!!! There are some good bits you can print off in the resources bit on the forum that i gave to M's teacher. She got the message after the third batch of papers landing on her desk ! And your right - teachers should be more informed... unfortunately some arn't. That's why i made it my job to 'inform' M's teacher .

 

I found it really usefull to read up on AS. Especially where schools are concerned - it's much easier to get help/fight for your child when you know EXACTLY what the school should be doing......... Knowledge is power and all that!

 

I hope my waffaling has helped <'>

[Canopus]

J is nine, and started middle school in September.  He has had been receving help from special needs since he started first school.  Around Easter 2005, the school were becoming increasingly worried about J's behaviour, and the result was that for his last four weeks of first school, he was removed from class and put on one-to-one with the headmistress.  He had different play time and lunchtime to all the other kids, apart from one, a friend of his choice who spent play and lunchtime with him.  When this happened, I was not happy, but the school implied that the only other alternative was to exclude him

 

Well, he left that school, and luckily the new SENCO seems to be very supportive, she immediately told me that she did not feel that they had coped with his needs properly, and that the new school will do all they can to support J.

 

Is the middle school aware of any problems that happened at the first school? If your son isn't statemented then effectively he will start middle school with a clean slate and the school will be unaware of any previous problems.

 

Is it "normal" for AS kids to start displaying really difficlut behaviour at this age? (9).  My hubbie and I are at our wits end, and Im just worried that the support we are getting from school is going to stop.

 

This is about the right age. When I was 5 and 6 I thought my problems at school was a result of me being too clever and the work I was set was tedious and trivial. When I was 7 and 8 I thought my problems was a horses for courses issue where the school focussed on things that I wasn't good at such as handwriting and football rather than things I was good at like computers and physics. It was only when I reached 10 did I start thinking something was seriously wrong with me. Y5 was very difficult and painful even though I had a much better teacher than in Y4.

 

By the time a kid reaches 10, they have to handle issues such as sarcasm and rhetorical questions and understand more complex jokes. Social etiquette also becomes more complicated as there are more unwritten rules that for younger kids. Failing to recognise certain social cues may have been tolerated at the age of 7 or 8, but is seen as unacceptable for a 10 year old.

 

It would probably be best to get your son officially diagnosed with AS then statemented. That way the school will know something is wrong and it isn't just straightforward bad behaviour. Most statements contain a list of services the school must provide, so if you think the school should be providing something and they aren't then they will officially have to once it is listed in the statement.

 

J also keeps saying how much he hates me, I know he doesnt mean it but its still doing my head in. He also says he hates his life, breaks my heart to hear him

 

This is probably the result of frustration because you are not doing what he wants you to do. He sees the problems as completely insoluble and you are failing to tackle the root causes. I went through phases like this when I would attack my parents and threaten to kill them because they flatly refused to deal with problems I was facing and I couldn't understand why they were refusing to deal with them other than trying to make me fit in and comply when I didn't want to.

[bid]

Hi Sarah, and welcome.

 

It will be invaluable if you make a detailed history of your child.

 

I found it useful to divide this into the following sections: General Development (from birth to date, did he reach his mile stones early, on time, late, and any specific health problems, etc), Speech and Language (anything that has ever made you feel uneasy or that appears different from other children, including things like understanding body language, eye contact, use of 'old fashioned phrases', etc), Social Interaction (again all your concerns), Home Life (especially if he behaves very differently compared to at school, any problems with food, routines, etc), School (any and all problems), Play (anything you think is unusual, obsessive interests, etc).

 

If you do this on the computer you can add new incidents as you go along.

 

This will form the basis of getting the right help from both Health and School. Whenever you have an appointment take along photo-copies to give to all the professionals present.

 

As regards to CAMHS, you can also phone them and explain that you are desperate. Say you will accept a cancellation appointment at short notice...this can often work. Phone ever few weeks to see how things are going and to remind them that you are still desperate.

 

Phew!

 

Good luck! <'>

 

Bid

[Sarah666]

Wow

 

Thanks to you all for your quick replies.

 

At the moment, my head is all over the place, so every piece of advice and help I can get is so welcomed.

 

I must say I did have my concerns about the anger management, even J calls her the "angry lady"

 

Bid

 

Your suggestion about a detailed history is brilliant, Im starting it tonight, as soon as J goes to sleep - whenever that may be

 

Many thanks, one and all

 

<'>

 

Sarah

[mum22boys]

Hi,

 

Didn't have time to read all the posts so forgive me if i'm repeating anything.

 

Not sure where you are but i also was told about a very long wait to see CAMHS. In our area the wait was 6 - 8 months. My son M was seen within 4 weeks. I think maybe this was down to my GP's letter as I had provided him with a list of concerns about M. It's now we are waiting to be seen by the Communication Disorder Assessment Clinic.

You might want to start a diary if you haven't already done so particually if you do have a long wait for CAMHS, I initially started mine thinking I had months to wait but even 4 weeks worth was an eye opener. I record all M's tantrums, his obsessions, strange routines etc.

I also asked my Gp seperately to refer M to Speech and Language so he could be assessed. This has now been done and is a step forward as it will be sent to the Communication Disorder Clinic.

Do you have a school nurse? Not sure how it will help but ours has been asked to get involved by the hospital and i am meeting with her this week. Also it was suggested by M's school that i get in touch with the Special needs Health Visitor. Ours helps you with the process and helps deal with behaviour and has support groups running for parents. I am due to meet her for my first meeting in a couple of weeks.

Also it may be an idea to take photos (i've done this of M playing - well lining everything up) and also videoing the tantrums (i know it's not easy but well worth it if you can, so far we have only got one recorded)

 

Hope this of some help and not a lot of waffle!!

[mel_jayne]

i've been on the waiting list with CAMHS for 3 months and i got told 3 weeks ago that he's 4th on the list .Things got really bad with kyle i contacted CAMHS to see if they could help,NO .I was given a number from surestart for a local support team(for parents having problems with kids),they've been brill.They come out every couple of weeks and i can phone them for a whinge.They told me to keep phoning CAMHS cause everytime i phone it gets registed.

KEEP PHONING THEM AND LET THEM KNOW HOW HARD IT IS.

GOOD LUCK AND KEEP US POSTED

[Sarah666]

 

I feel like a real failure as a mum to admit to most ppl how hard it really is

 

Somehow , here it seems fine to feel like that

 

Thanks guys

 

love

 

Sarah

[minerva]

Is it "normal" for AS kids to start displaying really difficlut behaviour at this age?

 

I think it's normal for an AS kid of any age to be displaying difficult behaviour, but in my experience my son is at his very worst when things are upsetting him/not going how they should be etc. He was definately at his very worst in the schools he's attended, before he went to the EBD school he was pretty "normal" at home, after he went there he started behaving veryyyyy differently!

 

1. J pulled his trousers down in the playground and showed everyone his pants

 

my son apparently did that too!!

 

2. J called another boy a racial name - this has been officially recorded as a racial incident(headmasters words)

 

blah!! my son also got something "recorded as a racial incident", he said the "N" word to another boy in class....he was 7 years old at the time & I called the school to ask them if they had even asked my CHILD (i think they forget at times thats what they are) if he knew what he had said. They said they felt it was inappropriate to ask that at the time

 

anywayyyyyyyy they were shaply reminded that my son is himself of mixed race, Jamaican & British, he just happens to "look" white with a tan!

 

i told them it was as ridiculous as reporting me for being prejudiced against white people if i called someone a name! they disagreed

 

when i got off the phone to them i talked to my son & asked him what he had said & if he knew what it meant, he told me & said he didnt know. I then tried to explain what it meant....he says perfectly innocently........."but it cant mean that mum cos i got it from a puff daddy song"

 

why dont people talk to children any more??

 

the first thing i would ask is "do you know what you said??"

 

then if after they learn the meaning of the word they continue to use it THEN maybe they should be punished!!!

 

You know what i love the most about this site?? It makes you feel more normal!!!

 

You are definately not the only one who feels they cant cope at times, some days are better than others but deep down its always there, just takes a lil push before you fall back over

 

luckily, we get back up

 

sorry for ranting!!