Support and advice needed, please: son miserable at school

[ToffeeChristmascake]

Forgive the long back story here, but it is necessary. I feel really down about this today and could do with some MN wisdom.

My son (11 and in his last year at primary) is dyslexic and has problems with anxiety/OCD. We have had a lot of problems with school over the years. He had a very difficult time in his early years and was quite disruptive. Once he was diagnosed as dyslexic (at 6), he received the extra help and understanding he needed and his disruptive behaviour stopped. However, the anxiety that manifested itself in disruptive behaviour now turned into OCD behaviour - rituals such as hand washing, checking things, shutting the bedroom door a set number of times, etc. We have been to CAMHS more than once to help him.

Two years' ago, his anxieties became so great that he became hysterical every morning before school. He was unable to face going into class, so spent half days in the school office and came home in the afternoons. We were seeing CAMHS at the time for help with his anxieties, so we were given a lot of support in helping him to overcome his fears. He was given his own teaching assistant - a wonderful, intuitive woman, who was a great support for him through this time. He is a brave boy and he managed to overcome his fears and get back to school full time and without a TA.

The next year went well. However, things have deteriorated since his return to school in September. He feels that he does not fit in with his classmates, he finds playtime stressful, he finds lessons either boring or stressful. He seems to worry all the time.

He feels sick a lot; he has stomach aches a lot; he complains of having nightmares about going back to school; his hands are dry from all the hand washing; he spends large parts of the day completing rituals to make himself feel safe.

I keep an eye on him constantly to see how he is, as he does not always want to talk about it. I have noticed all that was going on, but I hoped that two weeks' relaxation at Christmas might restore him.

Today, he told me how unhappy he was and asked me, not for the first time, to home educate him until he went to secondary. I pointed out that this might make the transition to secondary school much harder for him. In fact, I would do it like a shot if I thought it was the right thing to do. I hated forcing him go to school when he was so unhappy about it two years ago, but I did not want him to become school phobic. He does say now that he is no longer scared of school - he is simply miserable.

I'm planning to go in and discuss this with the headmistress when term starts, but, in the meantime, any advice and support would be much appreciated.

toffee I know what you mean about not wanting another lablel for DS...sometimes they help, but sometimes not...
Just popped back to add that I was thinking about this last night (avoiding thinking about my own school issues with DD LOL) and really feel your DS will miss so little in the last couple of terms at school. When my DS1 was in Y6 they did SATs just after Easter, then spent the rest of the year playing rounders and watching DVDs it seems (slight exageration, and he had a fab time...)Also will your DS be due to do SATS?
These can be (depending on how school handle them) quite stresful, and not what your DS needs...but also to note that a lot of secondary schools (not all) use SATS results as a basis for "setting" DC for some subjects, so if he isnt going to do them (and it doesnt really matter at all if he doesnt!) then you may need to arrange for his primary school to pass on some extra info to secondary school re DS levels etc....

And I know what you mean about being scared about doing something so "outside" the "norm" I spent a long time considering Home Ed before I did it. Nearly evryone I knew told me I was totally mad for considering it....told me I would disadvantage my DC for ever etc....BUT I am so glad now we did it. It was without doubt the right thing to do for my DC at that time.

Good luck with it all.

OFM - sorry to hear you are also having worries over your DD. It's good of you to think of me when you obviously have plenty going on in your own life.

My DS is meant to be doing SATs and is in a booster group at the moment, presumably to push his grades up a bit. I don't care at all if he does the SATs and I don't think he will cope with the extra stress at all well, so I would be very happy for him to miss them. That's good advice about the school passing on his info to the secondary school to help with assessing him, though.

It's lovely to hear how well home education worked out for you. It sounds as if it has given you and your children some really happy memories.

I hope you manage to resolve the current issues with your DD.

Just wanted to share the good news: saw the head this morning and she said she had been worrying about my son all weekend and has come up with a plan. Apparently, he is allowed to have six weeks off school on flexi-time, with the aim of reintroducing him to the school system. As he is obviously not well enough to cope with school - and certainly not SATs - at the moment, she suggests he stays off sick for as long as he needs (I know his doctor will support us with this) and then has access to school events as and when he wants in the last six weeks. This means he will be able to join in any end-of-term parties and other social events if he wishes, but also that he will be entitled to join in the transition events to the secondary school.

She agrees with me that we should treat this absence like home education, in as much as my DS and I will choose what to study and when, rather than have to follow the curriculum. So it is a bit like having a 'taster course' of home education, but without actually leaving the school system. Amazing.

I think we are very, very lucky to have such a sympathetic and understanding headteacher.

My son is delighted and is already a different, more relaxed, child. We had such a lovely day today. After visiting a home ed family to borrow some books, my son asked to visit the pet shop so he could look at some of the tropical fish for the project he wants to do. Then we bought a notebook for him to keep a diary of his home education adventure. Back home, he willingly and happily helped me with the chores around the house, then watched a bit of telly before lunch. After lunch he read his book. When we picked up DS2 from school, DS1 was sweet to him and raced him all the way home (usually DS1 comes out of school stressed and shouts and loses his temper with DS2, so this was a marked difference).

We have an appointment with CAMHS on Thursday.

i hope you get it sorted as i am going through similar things withh my son and i dont know what to do as he is so upset and angry all the time

Torie - so sorry to hear that. How old is he?

She is. I feel very lucky.

I spoke with the head of special needs at the secondary school a few weeks' ago and, yes, I need to speak with them again. I hope that CAMHS will be in touch with them too, in order to advise them on how to help my son settle in.

Thanks for your message.

That's a clever idea, Pixie. I'll do that.

really pleased at this news Toffee, it seems like you have a different child already.

Enjoy! xxx

Just back from an appointment with CAMHS. The woman we saw suggested that my son use an online learning-support group for children who can't attend school. I could see my son fighting back the tears as she said this. She meant well, of course, but DS told me, afterwards, that this just felt like more pressure again and he is happy learning at home with us as his teachers. The CAMHS woman is going to give us a couple of weeks to consider it.

I'm not going to insist my son does it if he doesn't want to, though. The last thing he needs at the moment is any more perceived stress. I reminded my son that we were on his side and that we weren't going to make him do it if he didn't want to. (Actually DH was quite disappointed at the idea of someone else muscling in on the home education - he is really enjoying it now, particularly after his success at teaching DS the months of the year yesterday, which six years at school had somehow failed to teach him ).

The CAMHS woman also brought up the issue of ASD and agreed with my suggestion that we ask our GP for a referral to have a multidisciplinary assessment, which my son still hasn't had. Although she did say that his dyslexia and anxiety issues were, in themselves, probably enough to explain his aversion to school.

DS will not want to have any assessments at all and I balk at the idea of putting him through it. On the other hand, if he does have Asperger's it would be helpful to know (different criteria for treating anxiety, for example).

This week has been lovely. Ds has remained very cheerful and willing to learn. He particularly loved learning with DH on Wednesday and is excited at the thought of us taking him on educational trips whilst his little brother is at school. He doesn't miss school at all and is adamant that he never wants to go back there.

It's funny how we have adapted so easily to 'home educating' (although we are cheating, really, as we are still attached to school). I tried everything, and then, one day, it was the only option left. I have no doubt that we did the right thing. Just seeing the change in my DS convinces me.

Hi toffee poor ds, and what a brave boy sitting through a horribel appointment with people saying silly things (CAMHS person I mean not you, I dont think youre silly!!)
It is a good thing that they were in agreement with you seeking a more thorough assessment for Aspergers. Maybe, if you decide to go ahead, you could spend some time chatting to DS about it, what it may mean and why you believe it is important , and would be helpful to him, to either confirm it or to rule it out.

I'm a bit confused about the on-line learning thing If you have agreed a plan with HT and they have recorded him as flexi schooling or "being educated off site" (which is what I imagine they have done from what you've said) then it is really none of CAMHS business how or what he learns....they may make suggestions I suppose, but at the end of the day you dont have to pay any heed!
Just as it would be totally within your rights to de-register him totally from the school and home educate him following any curriculum (or no curriculum!) you wished...and it still wouldnt really be any of CAMHS business...
so not sure why they are "giving you 2 weeks to consider it"....all they should be doing is possibly identifying possibilities to you that they may think might be useful and leaving you to decide...

I LOVED the freedom of Home ED, and so did DC...letting them learn about things they wanted to learn about seemed so much more rewarding (and logical!) than sticking to any enforced curriculum, so I can see DS point about pressure etc...

Did they offer you any other suggestions of things they might actually be able to do help with his anxiety?

Anyway, well done for getting through app. Maybe have a nice fun day with DS tomorrow to make up for it all...and you need to go have a large tonight!

phew, found this thread at last toffee.

I have very little time for CAMHS, so you dont really want to know what I think. Or you can imagine, anyway!!

Nothing to add tonight, but well done and enjoy your happy and relaxed DS.
Plus, I am absolutely knackered and can't string more than 2 sensible words together!!

Toffee - again I'm in total agreement with OFM. I think the CAMHS woman felt she needed to suggest things. You have a lovely, supportive headteacher who has lots to make you feel at ease with your decision - have the courage of your convictions!!
I have a lot of sympathy with what homeboys is saying too. Even if you do get a diagnosis of aspergers, will it really change anything? I agree that you could assume somewhere along the spectrum. I suppose the only good thing about a diagnosis is the info it gives and the things that might be put in place for DSs secondary ed. But you could leave it until into the summer to give him a chance to settle. I think he's had enough of professionals - poor lad.
He's a lovely boy, you're lovely parents, he's enjoying his learning - the end!!

Hi toffee

Well done to both you and your DS today. I had a terrible time at primary school and my sister was home educated as a result as my parents didn't want her to go through the same things.

I have/had ADHD, which wasn't diagnosed until I was 19 and made me a bit of an easy target for bullying and anxiety. I think an earlier diagnosis would probably have helped so if you think there is something there it might be worth investigating so that you can be most prepared to help him.

I'm a bit knackered as well tbh so off to bed in a minute, but wanted to let you know I was reading

We are definitely going to turn down the offer of online learning. To be fair to the CAMHS woman, she offered it to us as an option, but she didn't suggest we had to take it.

I'm in a dilemma over the multidisciplinary assessment. On one hand, if we have this, we should know, once and for all, if DS has Asperger's. Knowing this would help us understand our son better and know how to help him with his anxieties. There may not be much help available from CAMHS, but there is help and advice available from the NAS. A diagnosis wouldn't guarantee a statement, but it might help in getting one. It would also mean we could, presumably, negotiate more help at secondary level. And it would help DS understand why he feels so different from his peers.

According to my friend at the NAS, the assessment process is designed to be as stress-free and gentle as it can be.

On the other hand, as homeboys and OM suggest, it would be yet another source of stress to an already stressed-out boy who has already been through enough. It would give my son another 'label' to deal with (knowing he is dyslexic has been hard enough, in spite of all our attempts to point out the talents and advantages of being dyslexic). I could assume he has AS without the diagnosis. If AS doesn't guarantee a statement anyway, what difference would it make to his school life if he was diagnosed, apart from making him feel different from his peers?

Oh dear, I'm going round and round in circles.

OFM - if we do decide to go ahead with the assessment process, how do you suggest I bring this up with my son without him fearing that there is something 'wrong' with him? He just wants to be 'normal'. If he gets any hint of the word 'autism' in relation to himself (I wouldn't say it to him, but he might read it himself if he wants to look up Asperger's) he will be shocked and upset, as he knows several boys with autism and they clearly have quite severe problems.

Also, OFM, CAMHS didn't offer any help with DS's anxiety, but I presume this was because it was an initial meeting and there is still a question mark about whether or not he has AS. A large part of the session was spent chatting with my son about school.

homeboys - Thank you for your post. I am reluctant to put my son through any more stress and I understand your viewpoint. But, as you can see, I am still undecided as to whether a diagnosis would benefit him or not. With regard to cubs and scouts, I have suggested this to my son in the past and he refuses to go, even when he has a friend there. He hates organised group activities. But thanks anyway.

PA - I now get a sinking feeling at the thought of CAMHS and I know several mums who feel the same. I needed a lot of persuasion to go back again.

OFM - thanks, that's lovely of you to say. I do feel very happy with our choice to home educate and we are, indeed, lucky to have such an understanding headteacher. My concern about leaving the assessment process to the summer is that it all takes time and we should probably get the ball rolling sooner rather than later in order to get any necessary help in place by secondary school (although, thinking about it, it's probably too late to get a diagnosis or statement in place by September anyway). But I agree that my son needs a break, poor boy.

PMPY - I'm sorry to hear what a terrible time you had at primary school. It is interesting to hear that an earlier diagnosis would have helped you. I suppose you may have felt a sense of relief once you had an explanation for your difficulties, which is what I would hope my son would feel. It's interesting to hear that your parents home educated your sister, but I'm sorry they didn't home educate you as well, as it sounds as if you needed it. Second children often benefit from the mistakes we make with our first.

Am going for a follow-up appointment with the doctor today and I want to discuss the pros and cons of assessment with him. It's tricky when my son will be with me though - maybe I can suggest he go out to read his book for a while because the doctor and I have some boring stuff to discuss .

So happy to read this toffee!!!!

Well done you on pulling him out.

I'm another vote for treat-your-son-as-if-he-has-asperger's-but-don't-go-through-diagnosis. The big thing is that you need to treat him in a way that is right for him, not right for the average child, but frankly it sounds as if you already making a good stab at it. :)

Thanks for your encouragement, Omm.

Saw the dr this morning. He said a multidisciplinary team would have discussed DS1's case initially, before he was seen by the clinical psychologist. He was sympathetic to our concerns, but pointed out that a number of people have already seen DS over the years and all have decided he does not have AS. He said it was perfectly possible for DS to simply be an anxious person and share some traits of AS without being diagnosable.

He did, however, agree to write to a psychiatrist to suggest another assessment for my son.

I am totally confused about what to do now. Would seeing a psychiatrist resolve the question once and for all? Should I put DS through yet another assessment? I am so torn between trying to resolve the uncertainty and protecting DS from any more stress.

toffee...in a bit of a rush, so will be brief..sorry!
wrt "a number of people have seen ds over the years and all have decided he does not have AS" that really all depends on who has seen him, for how long, and what "seeing" him entailed exactly. As you have said yourself your ds comes across as a "normal" shy boy when faced with a professionsl, so this may not be very helpful.
As to whether seeing a psychiatris would resolve the question once and for all...again that depends! Again it depends on how good they are! (it shouldnt of course, as they all should be good, but in my experince this can vary) IMO seeing a psychiatris could be a good starting point. They should be able to identify how likey AS is, and then go on to suggest a further multi disciplinary assessment.

WRT to whether to go ahead with an assessment or not, that is such a hard decision. I too was quite torn and put off seeking an assessment for dd3 for quite some time, but in the end we decided to go ahead. Fir us, we felt it would be helpful for us to "know" once and for all, and it has helped us move forward. Also she was really struggling at school, and getting a diagnosis has definitely helped in accessing the support she needs (although this has been a struggle)
We also strongly suspect DS1 may be hovering on the aspergers diagnosis line. We have never pursued an assessment for hime, because we never felt there would be really any benefit. He hasnt had any major troubles at school, and at home I think we just sort of accept his "quirks" LOL
It is difficult, because you dont know how things will turn out at secondary school. He may be fine. In which case there be no real advantage in seeking a diagnosis. If he struggles however a diagnosis may be helpful, but the process , as you say, will take a while, so waiting until he is struggling be a risk. But maybe a risk worth taking...it may that if secondary school are good, and aware of his struggles and anxieties then they will be able to supprt him appropriately anyway, and you have avoided upseting him further with lots more appointments.
Oh, and it would IMO be perfectly reasonable to attend an appointment on your own without ds. That would make it much easier for you to talk openly and honestly express your concerns without DS getting upset or having to go through the trauma of another app.

good luck whatever you decide.

Toffee - just dashing out, so a quickie from me, and i am not too sure how relevant this will be to you, but I thought of you yesterday when I was at a governors meeting.
I am parent governor at a special school (PRU). At our meeting yesterday we were joined by a lady from CAMHS who works closely with the schools. She said that she had been on a course recently and a lot was said about too many children being diagnosed with AS and so they were trying to encourage people to not diagnosis it. Instead they had come up with this stupid plan to diagnose more specifically with things such as "Pathological Avoidance", (a pupil who all the experienced staff say has AS and refuses to come to school) which I think is totally daft and she was laughed at by all the staff there!! Basically it is a psycho smoke screen and so wishy washy its going to be impossible to get funding for someone who has "PA" (flippin heck I might need to change my name ), because it is so Bleugh!!!
ANyway, if this is what is being said by our CAMH department, I think it is probably a national thing, so be prepared.

It might not be relevant, as I say, but I just wanted to warn you. If they diagnose DS with a "fluffy", useless label, it wont actually help him!

I am prepared for people to have a go at me for what I have said here, but I am just giving my opinion after speaking with "professionals" yesterday.

Anyway, I hope DS has had a good day today.

Mmm Homeboys, that's probably the reason for what I posted, then.

Sorry not to have responded earlier. I fell asleep with DS2 at 9 o'clock. I feel exhausted and I know it's because of this AS query. Apart from it bringing back all the stress from our earlier attempts to get a diagnosis, it also makes me feel as if I'm going mad. I'm caught between people who take my concerns seriously and think it is a real possibility and should be explored further and people who give me that 'look' as if I am trying to label my son. Why would I want to have my son diagnosed if he doesn't have something? I just want to know for sure, so that if he does we can get him the support he needs and if he doesn't we can move on.

OFM - everything you say about the assessment depending on how good the professional is makes sense, thank you. It is backed up by an email from my friend at the National Autistic Society today, who wrote:

"No, they wouldn't necessarily have been qualified to diagnose him. Absolutely not. It is specific training...

Sadly, your tale is a fairly common one as there's still such a lack of expertise out there... I am not saying that I think he's definitely on the spectrum; only that none of the 'assessments' or 'tests' he's had and the stuff they've told you tells me he definitely isn't, if that makes sense?'

It is good to know that seeing a psychiatrist is a good starting point and may lead to the multidisciplinary assessment we should have.

It is also helpful to know why you sought a diagnosis for one of your children, but not the other. In my son's case, he does struggle at school and that makes me think a diagnosis would help him. I am concerned, for one thing, about his stress and anxiety - if this is a result of difficulties from being on the spectrum, I think we need to know. Also, I am worried about his social skills: again, if his inflexible thinking about friendships ("nobody likes me", "X meant to hurt me, therefore he is not my friend anymore") is down to AS 'black-and-white' thinking, we need to know that too. Incidentally, my son is convinced that his best friend meant to hurt and upset him and refuses to make up with him. His friend has been in tears over it, has invited him round and has insisted that he never meant to upset my son and that it was all play. Again, I get that feeling of going crazy. Is the friend covering up for what he did? Is he just too emotionally immature to understand the impact of his behaviour? Is my son absolutely correct in his estimate of what happened - or is he unable to 'read' the situation because he is on the spectrum?

So, there are two big things going on here for my son: one, he cannot go to school anymore because of his anxiety levels; and two, he cannot maintain friendships, so he is now socially isolated. Of course, both these things could be to do with other things than AS. It could be that my son goes to secondary school and thrives, that he makes a whole new set of friends and is very happy. However, if he has AS, his problems with stress, anxiety and friendship issues are likely to recur.

Without having a crystal ball to see into the future, the next best thing seems to be getting a diagnosis that we could trust, so that at least we would know the chances of him coping at secondary, and, if he couldn't cope, we would have eliminated some of the possible reasons why not.

PA - thank you for that information. The NAS would say the opposite - that, on the contrary, too many people go undiagnosed thanks to inadequate training and resources.

Homeboys - thanks for that too. I'll see if I can find out anymore about it.

I feel as if I am huddling in the middle of a battlefield, with the arrows of two opposing armies flying above my head.