Help !

[smallworld]

Hi,

I need your advice, or opinions on this please,

Rightly or wrongly, we have never sought a dx for our almost 10 year old son. We had long discussions about him with our younger son's paed (when he was dx) and she suggested he may have AS. She has said she will see H if doctor or EP refer him. School do not think he has any problems ,despite class teacher, (also SENCO) describing him as 'passive,sullen, in a world of his own, and with an attitude problem'.

This teacher shouts all the time (makes me look placid !!) he has told me that he has now given up listening in class (mainly maths where he can't see the point cos he knows how to do what they're doing, why keep asking him to the same sums over and over ? !!)

But, and this is the biggy, he says he wishes he was dead so that he doesn't have to go to school anymore.

I personally do not like this teacher ( I have tried to hide this from him) she taught my daughter 3 years ago, and she made it plain that she doesn't like boys ! I raised my concerns about H at parents evening recently and she just dismissed them all.

I had forewarned school that he has problems getting off to sleep before a recent school trip, when they returned she told me ;

"yes, lots of parents told us of their children's sleep problems, but whilst they were away they slept like logs, funny that, isn't it ?"

I also mentioned his clumsiness, lax joints,handwriting, inability to write down verbally given homework tasks etc.

He is very bright (top in maths until entering this class) so I doubt that he would get a statement given that he's in yr 5 and school think everything's ok.

It's the usual scenario of that he's been containing himself all day at school and we're getting the fallout at home.

Sorry for the long post, but this is just a snapshot of his behaviour.

I suppose what I reallly want to know is, what will we gain from a dx ? I don't think he'll get much support from school, just going on other parents' experiences.

As we already have another asd child, I think we probably know the score as to how to help him at home.

Does he need a 'label' ? (sorry, but that's very much how it's viewed in this school)

The ironic thing is, our 5 yr old attends the attached infant school and has had fantastic support !!, I'm now worrying about his transisition to Juniors in 2007 !

Thanks for reading my ramble,

 

wac

Edited November 6, 2005 by waccoe

[mum22boys]

Hi Waccoe,

 

Personally I would seek a diagnosis. I don't feel 10 years old is too old to need help. I know you can already apply help as you have with your younger son but I think there is more to it than just that.

We are seeking a diagnosis for our 5 year old. Not so much for recognision now but later. We realised at 5 he has got away with hitting his teacher but when he gets to 10 and if he lashed out at school it would be a different scenario. my concern is when my child gets to secondary school so i want to make sure all is done to help him now particually with him understanding how to control himself when he has a tantrum.

At the end of the day only you can decide. if you feel he has AS then at least seek help, you already know the challenges by having one child with AS.

 

Good Luck <'>

[jools]

we only started looking at getting some sort of recognition for G's problems at the beginning of this year.

 

education wise this is in preperation for when he moves to senior school (he's yr 4)

he is doing very well in maths but not so good in literacy......however there are quite a few children poorer than him in his class.

this does not interest me (in the nicest possible way!) i don't want to hear about the problems of other children......i want my own child to be sorted and happy.

the specialist teacher from camhs summed it up for me when she said support was needed to close the gap between his intellect and what he produces on paper.

it doesn't matter if he is in the top group for his year........if he is not reaching HIS full potential than he needs support.

 

i would want the 'label' because from personal experience we won't get the support he needs from school without it

 

hope my ramble makes sense!

[lisann]

Hi

I deff' would try for the dx if you are sure he has some sort of ASD AS because it will only help him.Say in the worst case he was to do something like hit a teacher then with a dx at least he won't be just labeled a naughty disruptive child. And there will be certain Special need plans the school wil have to follow set up from the LEA .Also you know him better than anyone and with one ASD child already you prob' know he has ASD AS therefore it will put your mind at rest.

 

Hop this helps

 

Lisa x

 

[mossgrove]

He is very bright (top in maths until entering this class) so I doubt that he would get a statement given that he's in yr 5 and school think everything's ok.

It's the usual scenario of that he's been containing himself all day at school and we're getting the fallout at home.

 

Wac,

 

I am sorry if much if what I am about to say is too blunt, I just think it needs saying!

 

I am not really sure what you are trying to say. By all means decide that you don't want to go down the diagnosis route if you think your son doesn't need support, but do not ignore that route because you don't think your son will get support. The first step is establishing his needs, then you can turn your attentions to the hows, whys and wherefores of what provision he will get.

 

As he is already saying he wishes he was dead so he doesn't have to go to school your son needs support. Getting support is far, far easier with a diagnosis, so you need a diagnosis, pure and simple.

 

You son will be going to senior school in a couple of years , and his coping skils that have got him through primary school may no longer be enough. If you have a diagnosis you will be able to deal with issues much more effectively, rather than adding your name to the bottom of a long waiting list to see someone and potentially waiting months for something to be done.

 

I am not saying this is true in your case, but sometimes parents will not pursue a diagnosis for a 'mildly affected' child because they feel that, in a sense, if the child gets through school without being diagnised they are not really affected by a life-long condition after all and can enjoy their adult lives without being labelled as Autistic, and the decision in the parents mind becomes one of whether to have an Autistic child or not. All I will say on that is your son is already aware that he is different and he is entitled to an explanation for the sake of his own self-esteem.

 

If your sons teacher is dismissing your concerns I know and you know that his mother knows best and such concerns shopuld not be dismissed so lightly, so you would be justified in going higher up the chain or asking for an EP asessment.

 

I went through my school career as what I would now describe as an 'Undiagnosed Aspie' and that still applies. I was similar to your son, academically able, clear top in maths, sullen and disruptive with a bad attitude (In my teachers view). Academic ability is a two-edged sword for an Aspie. It helps you to cope, but problems become masked and people think you are coping when you are not. Ultimately I massively underachieved academically and had issues with my self-esteem that took years to unravel.

 

One thing that may help your decision is to read 'Martian in the Playground by Claire Sainsbury as it gives a more eloquent overview than I could of the Aspie experience in Primary schools.

 

 

Simon

[Kathryn]

I agree with Simon on this one. Senior school presents far more challenges, he may begin to need more help and it will be easier to convince others that he needs it if the dx is already in place by the time he gets to year 7.

 

My undiagnosed child coped for 10 years in the system and at times did amazingly well, but the cost was very high. I would not want another child to go through this.

[loulou]

Hi,

 

I would also agree with what everyone else has said. I think it's really important to seek a diagnosis for your son.

 

If he says he wishes he were dead, then he needs help and support.

 

I think you have to consider what it will be like for him as he reaches puberty and as he goes up to secondary school and beyond.

 

If you start the process now, it should be completed before your son goes to secondary school. This would give you time to consider which school would be best for him and to ensure that he gets the right support.

 

Loulou x

[Clarkie]

Hi there

 

Have posted lotsa stuff about our son so won't bore you with all the details.

 

Suffice it to say - I wish we had got a dx when R was in Primary

 

Take care

Clarkie

Edited March 17, 2006 by Clarkie

[oracle]

I also agree with Simon. David did not get his dx until he was 13. He coped his way through most of primary school - the last few months there were difficult for him. The transfer to the Comp was a nighmare and I think you know the rest. If the cracks are already begining to show it's time to do something before they are to huge to fill, which is what happened with David.

 

While the dx may not give your son the extra support that he will need - it should and we all know that - it will give you the extra weight to fight for that support. Without the dx your son will never receive the support he needs.

 

Does your son know about himself and what you suspect? I ask because for some of our children the dx answers questions they have and they then are better able to cope if they can understand themselves. This does not apply for every child again it did for David.

 

<'> Carole

[Guest flutter]

you need a daignosis to access support if it is needed i thinks

i think you guys needs it

C x

[smallworld]

Hi again,

Thanks everyone, I think you all said pretty much what I really needed to hear. I keep wavering from one week to the next on this decision.

I think the thing I was tring to get at (not very eloquently!) was, is it possible to go through life without a confirmed dx but being aware of your AS, and cope ? I know lots of adults for whom this is the case, but what about children ?

Carole,

He has no idea that we have these concerns, and doesn't raise any with us ( but because we talk about his younger brother's asd a lot, he does know about asd )

 

This thing about wishing he was dead has only started since this school year, and he initially mentioned it as a way to escape his teachers shouting ! I got very upset, and he now knows what effect this has on me. How do you know if a child actually means it when they say 'I wish I was dead' ?? or do some children use it for effect ? (I know that as a teenage drama queen, I was guilty of this)

 

In the past we have had problems with him wanting to go and live in a childrens' home,and shouting all the time,from watching Tracy Beaker.he read a book about a boy with ADHD and started telling me he had this, and acted like it. In the same way, I wonder how much he picks up from his brother's behaviour, and does he think he'll get away with more by acting the same ? Our paed thinks this is a possibility.

 

I suppose what I'm really wondering is, does he just have aspie traits like me and his dad, or does he have AS ? There's only one way to find out, isn't there ? I'll go and ask for him to be referred, perhaps we could ask for a block booking for the whole family ?

 

Apologies if I sounded pessimistic about getting any support if he is dx, that's after asking other parents of SEN kids in juniors !!

 

Thanks again,

 

wac

 

P.S. can somone remind me how stop by words being eaten when I'm correcting my bad spelling ?

[Malika]

Hi wac

 

Even if you are not sure you'll get one I think like everybody else, that you should go for a Dx.

If any thing happens you will have the possibility to ask for more help if not your son may just be considered to have an attitude problem which is the last thing you want if he has AS, he may have ADD ( the passive kind of attention deficit) at least asking for DX will make you find out and apply the correct strategy, beside often problems get worse as they grow older and much more is expected from them at school.

Yes go for it I know it is stressful but it is for the best.

Try not to think that your son is faking it he may do it sometimes for attention but would not be able to show consistant attention pb at school. Beside if he immitates character from TV or books it may be that he is unsure of himself and find difficult to establish firm boundaries between fiction and reality.

 

Take care. <'>

 

Malika.

[mel_jayne]

hi wac,

I agree you need to get dx just so you no with what your dealing with and get the proper help you both need.I don't no weather you no,but i'm still waiting to get a dx for my 9 year old boy.I've alway's know there was something wrong with him so it's taken me about 9 years to get him referd to CAMHS .It's not that you want to be something wrong with them,it's just that you need the right support.I'm finding he's getting harder as he getting older.So i believe without the right support there's only so much you can take before it all grinds you down.

Good luck with what ever you decide. <'>

[phasmid]

I'm with Simon and Carole on this one. Phas jr was dx'd at not quite 11. We'd had our suspicions for a little while and had a pretty good idea what we were looking at. Oddly enough the school reached the same conclusion a few days after I had spoken to gp and asked him for a referal. Ultimately we were right and AS was diagnosed within a few months.

 

Having that bit of paper with a dx on it made all the difference. It has never seen him go beyond School Action as far as any sort of intervention is concerned but, and it's a fairly BIG but, it has made an awful lot of difference with his teachers and their approach to him. That alone has made his life (and theirs) much easier.

 

I would argue (till I'm blue in the face) that a dx is NOT a label. It is a signpost that points you toward help. Had we not got his dx i am 100% certain that phas jr would have had to leave the mainstream school system - they would not have made the allowances they have without it. Where that would have left us? God knows.

 

I'd say go get it checked out.

[smallworld]

I feel like I've brought in a load of expert witnesses !

Thanks to all of you who took the time to reply, I think I already knew the answer, and just need a kick up the backside as usual to get me going on this.

Really, this is the crux of the matter, I don't think I've got the fight in me anymore, I feel like I can't face it. This sounds entirely selfish, and I know I must pursue this dx for my son's sake (and the whole family's sanity !)

There's something about this time of year. Bonfire night, or rather the lead up to it, has caused my youngest son to regress, and he's refusing to go to school because of the loud bangs during playtime last Monday. I had to physically carry him out of school last thursday, and I couldn't get him to wear any clothes to go in on friday. I gave up and kept him home.

Before Xmas, we have elder son's birthday and youngest's annual review. I still haven't unpacked totally from our hol at half term

Added to this, I can't shake off the sore throat I got before the holiday, so much for anti-biotics !

The house is a tip, Aggie and Kim would run a mile

I think I need to get myself into gear before I can tackle anything more serious than the washing

 

wac

[oracle]

Wac <'> I know how you feel really I do. Climbing the ###### mountain twice is not an easy thing to do. I do not know if you are aware but Matthew was actually diagnosed before David and that was how I eventually told him that he had autism (AS) to. I told him that he knew that Matthew was being assessed for autism and I told him what it was - as simply as I knew how - I also made sure that I told him that everyone with autism was different. I did this because he has never been a huge fan of Matthews.

 

I said that he knew that he was having a bad time himself and that he was very unhappy about lots of things. I said that I was wondering if perhaps there could be a link between Matthew and his autism and David? David has never liked to think that he is anything like Matthew but he wanted answers. He and Matthew will both tell anyone who will listen to them that they are NOT like each other

 

You know that we are always here for you should you need help climbing this mountain - that's what friends are for

 

Carole

Edited November 7, 2005 by carole

[smallworld]

Thanks for that Carole, this has been a difficult post for me

Off to find some crampons for that mountain...

Need to get back to being a ginger

 

P.S. being ginger excused most of my bad behaviour as a child (and adult ) how crazy is that ????

Edited November 7, 2005 by waccoe

[Malika]

Hi Wac.

 

I feel for you when you say that you don't have the energy anymore because life is so draining sometimes and we wish for a break which never seems to come.

 

Since I lost my appeal to the SENDIST I thought I would not try anything anymore but then I found myself going to OT assesment and I am not happy with the result so I will ask for a better one in few months and I asked for a referal to a pediatrician and one to genetic counselling unit (and because the GP did not explain H had autism it took me 2 weeks before I could get to talk to the consultant and explain why I wanted him to be checked for fragile x and william syndrome) and I contacted MENCAP to have more advice about what to do with the school and the GP she will visit me on tuesday to discuss things with me, and here I am battling again for I don't know how long for ever probably, without talking to get the right blood test for my daughter and her appointment with the consultant sorted , and even for my partner which I suspect to have hemochromatosis and the GP saying he did not need to be check for it but all this has been done last week we just have to wait for the results to come through, then another battle again probably to get a treatment fast...

 

You see you just have to start it and then the energy for it will come because the will for the people we love is so strong.

 

As for your son may be yes it is good to give him a break what I do with mine is (when I see he cannot cope) to touch is forehead and say you are not well may be you got fever let me check and I end up telling him that he is not too bad but he better stay home for one day to get some energy back I don't do it often may be once every 2/3 months but it is usualy enough to solve pb before they amplify of course I never tell him it is because he is over the top, too worry that he could get an abit of it.

 

For the sore throat try this take 2/3 pieces of cinnamon stick and 5 cloves make them boild in 2 cups of water for 5 mns and thieve the decoction add half lemon juice and 2 spoons of honey for me it works wonder...hope it will help.

 

As for your son DX may be give yourself a dead line like after Chrismas holiday and ........ best of luck and energy We all know it is not easy. <'>

 

Take care. <'>

 

Malika.

[smallworld]

You're right Malika,

I should just put this to one side till the new year, and spend the time until then making some sort of record so that I have everything in place when the questions start.

I really admire your energy Malika, I was reading the links you had found in connection with another thread. How do you find the time ?

I think I need to spend some time thinking about what I need right now before I can start another fight. It might mean that I have to give up some of my voluntary work for now, although I love my time at toddler group.

bye for now,

 

wac

[Malika]

Hi wac

 

Yes give yourself some break try to push all the bad thoughts away and relax as much as you can, and start the battle after Christmas beside by the time you would get things sorted it would be 2 weeks before christmas when everybody got his mind somewhere else and cannot care less , another thing is if you don't feel ready for it you are not going to get your best shot (much needed)

That what happen for H OT assesment because it came out of the blue they had told me 1 year waiting list and after 4 months they gave me an apointment because everybody was on holiday and now H has not been tested for sensory motor integration and I will have to fight for that one as well.

Really if I had been ready for it may be it would have been different.

 

Beside you know you will get support from the group <'> when you need to, just ring the bell and somebody will answer.

I don't really have so much energy it is just because I am so interested in science and autism and I found this group so stimulating not to tell you that somebody here would be happier if I was doing a bit more ironing instead, bless him for his patience..

 

Take care. <'>

 

Malika.

[smallworld]

Thanks for that pretty sound advice Malika,

I will just set the wheels in motion for now, we all know how slowly they turn

Hopefully by time we get a response, I might feel a little less down than I do right now. If i don't, then it's time to ask for help,

 

wac

[LittleRae]

Hi Waccoe

 

You've received some great advice here. You're going through a lot at the moment and I agree with the advice of setting yourself a date to seek a diagnosis and don't worry about it until then. If you can clear a path for yourself mentally, you will cope much better. It's the small things that trip us up, I find, and make everything overwhelming.

 

I'm in a heap here as well - don't even mention the house, and yes. the packing and shopping from our half-term trip to London is still in the hallway & probably will be for a while (!). Quite often I don't take my own advice, but I've found this helpful....

 

Make a list of what you need to accomplish & tick off the small things first. If it's to clean a room, set a timer and give yourself 15 minutes to do it. Tear around like a mad thing, but know that it's only for 15 minutes ( I can do anything for 15 minutes). When the timer goes off, stop. Now you can mark that room off your list. Later in the day do another - or wait until the following day. You can give yourself shorter times for other jobs - e.g. 10 minutes to wash the floor. 5 minutes to tidy bathroom. If you do the 'quick' jobs first, your list will get shorter more quickly. I'm often sitting exhausted in front of the TV but think to myself - I have 5 minutes when I can do something, what will it be (usually, iron school uniform for the following day or take 5 t-shirts to iron & then stop).

 

I'd say that sore throat is lingering because of stress. Once you relax, it will probably go away. With regard to your voluntary work, why not take a break for a week or two then decide - often just having an interest outside the house is relaxing in itself.

 

With regard to dx - we got ours by accident. I had no inkling that there were such problems - as DS is our first, we just accepted him as he was... Now, I have to say that having a dx is great. He is entitled to extra hours resource at school which is used to stretch him - just this 5 hours a week makes him so happy. He is learning to type (thinking secondary school here). It's used to help him take part in paired work with other kids. Most of all, on the odd occasion when he lets fly in the playground, the staff don't jump all over him and cart him off as they used to do. When he acts up in class the teacher doesn't assume he's being naughty. They don't say 'why can such an intelligent boy not remember to write down homework and take books home?' - now, someone checks his journal & schoolbag each day. If they forget, I don't feel obliged to ring round his friends to get the work (previously I was embarrassed and took it personally if I had to explain to the teacher why homework wasn't done for the third time in a week!). I was quite embarrassed I have to say, going in to the school with the diagnosis, and they all thought I was crazy as my son was doing so well. But, I'm looking to the future. I know already that he will find it hard to cope in secondary school. I've already had to change my plans as I'd hoped to send him to a good independent school, but this would necessitate him being on a bus for an hour each way every day. Now, I'd be afraid he wouldn't get on it to come home... I'm hoping to use the next 2-3 years before secondary school to work on organisational skills, making sure he can take his own homework notes, find his books, etc. It is only as time goes on that the difference between my son and his peers is becoming obvious (the change in the last year is astounding). Also, as someone else said earlier, it's not okay if they are coping and in the top set at school. If their potential is so much more, wouldn't we be remiss as parents if we didn't get all the help they need to achieve that? If my son can't achieve his ambitions I don't want to think that there was something I could have done, but didn't. I know you do a lot at home but school is a major part of their world and it does no harm to plan out the next 8 years (if you look at it, he's not halfway through yet) and anticipate future pitfalls. Things aren't perfect, but I find having a dx means my son gets a 'second chance' when things go awry at school.

 

Sorry, seem to have rambled on a bit here (don't often post, and when I do I get carried away!) - I must go now and take my own advice.

 

BTW, when correcting spellings, did you hit the 'insert' button (over the delete button) - that way you can type without going over other words.

 

Hope things go well for you

<'>

 

A

[Minxygal]

I agree with Carole and the others on this one. James struggled along through primary school and although school wouldn't commit to helping us they made constant comments about his behaviour and his inability to socialise. When he hit comp it was like a bomb going off. It was too different and he really struggled. If we'd have got the diagnosis before he started there maybe we could have done more to make his transition a little easier and taken some of the stress off his back.

[smallworld]

Thanks D

Some great advice, thanks !

You seem to have got some great support for your son with a dx. I hope we can achieve much the same.

He managed to give another boy a split lip yesterday, when he retaliated after being punched and kicked. I know we're not supposed to encourage children to fight back but telling the dinner ladies or a teacher seems to have no effect.

He got sent to the headmaster and tells me he didn't get shouted at ! (he's amazed cos his teacher shouts all the time )

Perhaps school are starting to get what I've been saying about him......

 

wac