Dh and I struggling to cope with ds1, don't know where to turn - long

[moosemama]

Sorry this is really long, I don't really expect anyone to plough all the way through it, but I really need to let it out.

I have had to keep ds1 off school since Tuesday as he is like a wound up spring, lashing out at everyone, particularly at school. He has had a cold as well and initially we told the school that was why he was off. Physically he was well enough to go in by Wednesday but was nowhere near in a fit state psychologically/emotionally. I have since been to see his teacher and explained the situation and she agreed it was probably best to keep him off till after half term and confirmed that he has been getting steadily worse socially at school as the term has gone on.

We found out on Monday evening that he had punched a girl at school in retaliation for her pushing him over and had been told he would miss playtime the following day as a result. At first he lied and said he hadn't done anything and she got him into trouble for nothing, then he said he only pushed her back lightly, then he said he just hit her gently and eventually he admitted he punched her, but only after I said that I knew he was lying so he might as well tell the whole truth.

On talking it through with him it became apparent that this sort of thing has been happening more and more at school, but the school/teacher hasn't told us.

We have spent a lot of time this week going through what's been happening with him and his perceptions of why he is choosing to react physically when he never has before.

He can tell us that hitting/hurting is always wrong and that you should fetch an adult to help sort out any problems, but then at the end of the conversations he says "yes but, she/he deserved it as they did x, y, z to me". Its like he can talk the talk, but not walk the walk.

Its being made worse by his inability to perceive the difference between, bullying, teasing and just lighthearted joking etc. He takes everything as a personal insult or affront.

We have just finished getting the school to deal with the bullies that have made his life hell since he was in reception year (I know, I know, he is classic 'bullied becomes the bully') and now he is going round, in his teacher's words "lashing out at everyone over the slightest thing". Although she then said that he hasn't been identified as being a problem behaviourally (which is confusing and worrying) although there has been only one 'punching' incident, the others have been more in the form of finger poking or melt downs.

It took two and a half days of him being at home with me and his baby sister for him to finally relax and calm down. Prior to that he was lurching from pitiful sobbing to hysterical crying to angry screaming and shouting.

He is furious that we have banned him playing computer games for a week as a consequence of him punching the girl at school and to be honest I'm not even sure if that was the right thing to do, because I want home to be a safe space for him. We have talked about consequences and he says he understands that we needed him to think every time he couldn't play a game that it was because of him hurting another child and that we hoped this would make him think twice before doing it again. We have come up with some new 'cool down' techniques as the old count to ten, breathe and walk away wasn't working. Yet tonight he has had a disagreement with his younger brother over some silly teasing and punched him in the face! I was horrified with him and am at a loss to know what to do now. He knows right from wrong and good choices from bad, but seems unable to apply them to his own behaviour. Comments on previous school reports have stated that he has an incredible sense of justice when it comes to others, but unfortunately struggles to apply this to himself.

He was seen by a Paediatrician in January, who gave him a verbal diagnosis of Aspergers, although to be honest the Paed didn't really seem to know all that much about ASD/Aspergers himself. At the time of the appointment we had no serious worries about his behaviour and he had never been physical that we were aware of, other than the odd spat with his younger brother akin to normal sibling rivalry.

We have this week just been sent the forms for referral to the CAMHS ASD Assessment Team and in the meantime we feel like there is nowhere to turn and no-one to ask how to handle things. How do we know if we are helping or making things worse?

It feels like things have been escalating ever since he started Year 3 in September. He is struggling to cope, mainly in the areas of social/peer relations and he is so anxious that he tells me almost every day that he feels physically sick (although he doesn't associate it with anxiety himself). Its like he has just been getting a little bit more full every week and now he is so full up he can't take anymore so has lost the ability to control his reactions, if that makes sense?

I don't recognise this angry, vindictive, physical little boy that is here at the moment, yet have seen glimpses of my lovely peaceful, calm boy while he has been home with me this week. How can I help him to cope with his anxiety and anger when I don't have a clue what I am doing?

Sometimes I want to just keep him at home and home ed, but then I know he needs the social interaction with other children and adults if he's ever going to learn how to function in the wider world. Then I think about those horrible little bullies that introduced him to hitting, hurting and humiliation and think that he would be better off not learning social skills from the likes of them anyway. It feels like a viscious circle.

I am so low at the moment, as is dh. I feel completely wrung out and ground into the dirt. We have spent the week going round in circles with him feeling like we've made progress only for him to say something that indicates that he hasn't actually taken in anything either from the consequence of his behaviour or all the talking and reading we've done together.

I don't know what to do to help him, me, dh or our whole family to get through this, yet I feel like its me that has to try and hold us all together.

To cap it all, now his younger brother is starting to act up and get angry as well, probably due to all the upset and tension flying around. I also hate that dd (who has just turned one) is seeing all this anger and tension around her when neither of my boys ever had to experience anything like that when they were babies.

I don't really know what I'm hoping to achieve by posting this, I suppose I just needed to let it all out and vent.

That's awful, what a horrible unsupportive Paed, why ever didn't he just refer you on and let CAMHS decide?

Fortunately the guy we saw was lovely, spent half an hour reading the history/notes our gp asked us to send him, then almost two hours talking with us and ds.

He said he is willing to diagnose Aspergers and has put it down on the CAMHS referral form as his diagnosis. He wants ds to have a full assessment by CAMHS specific ASD Assessment Unit to help us access appropriate support and services and to check for ADHD and dyspraxia although he felt he probably doesn't have ADHD but may well have dyspraxia.

We were very lucky to find him I think. We were referred to him by a GP at our practice whose own daughter has LDs, so she knew who to go to from personal experience.

We are struggling with homework with ds2 rather than ds1 at the moment, as the school in its wisdom has just decided to start giving numeracy and literacy homework out to y1 pupils on top of their reading and spelling homework. Fortunately, ds1 has a couple of teachers who don't believe in homework for primary aged pupils, so they generally make it very lightweight each week.

From what I've heard though it will be a different story next year. The teacher ds1 will have next year 'doesn't really believe in ASD'! and is very strict and autocratic.

Ds is terrified of him already having been told off in the corridor by him and then punished for 'answering back'. He was in such a state that his class teacher heard him sobbing and went to rescue him. She has since had 'words' with the teacher concerned. Unfortunately, reading between the lines of what she said to me, I don't think it helped much.

I am right with you. I desperately need to sleep, but am in bed avoidance mode as dd is teething and nights aren't much fun at the moment.

Thanks for all your input and support.

Sorry just skimmed the posts - in terms of immediate action could the school set up some lunch clubs eg lego / IT - ones which would appeal to a range of kids but where yours would feel safe and its structured? Might be something you can get sorted before dx. I know it doesn't solve the problem of how to get your son to cope with situations but it might give some short term respite until you get more support.

Sounds like a good idea grumpyoldeeyore, but I doubt its something the school would consider. I could look into whether or not there are already any lunchtime clubs he could join though.

He did used to attend French one lunchtime a week and SEAL another, but we withdrew him from French because he didn't seem to be learning anything any it was costing us a fortune. Now he has to spend that lunchbreak every week without his best friend (who not only helps to keep him calm and centred, but being the tallest boy in the year also helps to put off any potential bullies as well - they are an odd couple as ds is the smallest boy in the year ) and having missed a term and a half I think its probably too late for him to rejoin. If he could rejoin though, it would mean he only has 3 lunchtimes a week left to cope with, plus morning breaks of course.

Thanks for the idea, it has definitely given me food for thought.

Hiya, just re caught up with this - don't get on here too often anymore but wanted to see how you were feeling.

Just had a couple of thoughts:

Social Stories - sometimes will sink in straight away but other times you will need to use the story over and over again like a broken record. It can be disheartening I know but mostly you will get there - eventually.

Statements and Senior Schools - every year your statement is reviewed, in year 6 you will have an annual review in the term before christmas where you will discuss suitable schools (you will have already visited them I would imagine by then so will know where you want him to go) and transition. Then you will say which school you want him to go to and provided the LEA agree this will go on his statement. Some schools actually start this process in Y5 to help transition - ours does. Once it is on the statement it is just about set in stone and the school have to take him. The LEA shopuld check beforehand anywaty that the school are able to take him (ie have the right facilities/support). If the LEA names a different school than your choice on the statement then you are able to appeal.

Hi WedgiesMum, thanks that helps a lot.

I know I am fortune telling and its daft trying already to control what happens in the future, but I feel the need to have at least some understanding of the process.

That's interesting about the social stories as well. I often feel like a broken record when dealing with ds (head meet wall etc) so it makes sense that we need to keep revisiting the stories in order for him to get a handle on them.

Not feeling great today, ds and I had a huge row first thing this morning, my fault as I shouted at him when he spilled a whole glass of orange juice over half the kitchen including his baby sister in her high chair and me.

I've woken up with a stonking cold and headache and have decided its best to leave dh to take care of ds1 as much as possible today, as my tolerance levels feel very low.

We are friends again now. I went back and apologised to him for shouting and said I knew it was an accident and not his fault.

Sorry for the whinge. Am off to curl up with a large mug of coffee and some cake.

Hope that coffee and cake do the job! I find it's better to have a more 'hands off' approach when I am not feeling my best, as I am much less patient then. If I have no one else to help (like of DH is at work) I tell DS how much patience I have left by measuring it with my finger and thumb ('it's this big' or 'it's getting smaller DS') so he knows how close I am to yelling then he can decide to keep away or not! He's got very good at it over the years!

Another thought! DS is a great reader which really helps him calm down and often takes himself off for an hour or more to just read. He takes a book to school too to read at break and lunchtime when he feels unable to go outside (it's too hard for him with all the social interaction, noise, action and potential for misunderstanding 'normal' push and shove most of the time). Could your DS do that sometimes?

Hope tomorrow is a better day!

WedgiesMum

Coffee and cake, followed by a long bath has made me feel slightly more human thanks.

That's exactly what we want him to be able to do. He is an avid reader (we can hardly keep up with reading materials) and has said he would like to read rather than go out to play some days. I'm really hoping they will allow him to do this and don't say its not possible because they wouldn't have anyone to supervise him and he wouldn't be allowed on his own in the school premises.

Tomorrow is dh's birthday and he has the day off, so hopefully I'll be feeling a bit better before I have to have all three dc's on my own again on Tuesday.

moosemama - hi, how has your day gone? Every thing is so hard isnt it. My ds1 is 6yrs and we are at the beginning of the dx process. We had a man in from the county's Autistic team and he feels that he has aspergers and ADHD BUT he cant give a diagnosis - so who can????

I felt relieved when he said it as it means we can get our boy and us some help but i am now scared that the person who can diagnose him (whoever that is!) will say there is nothing wrong with him. CAMHS previously said it was my fault as i have a heart condition which has made him behave this way (WTF!!)

Which area of the county are you in? Am hoping we will eventually meet s dr like you have had

also meant to say (which was the whole point of me posting!!!) was that last year we had a dreadful teacher but this year our son has done fantastic. I am now dreading the next academic year in case he declines again

Hi 2boys2 It was dh's birthday yesterday and he had the day off, but I was really poorly (vile head cold and sinus infection - again) so he had the dc's and I 'almost' had a day off.

I've been a bit wobbly about his dx to be honest, as the paed was lovely but didn't seem to know as much as I felt he should about ASDs. I don't think he was a specific developmental paed, but just a normal paed and I noticed on the referral form for CAMHS that he has added a question asking whether or not his diagnosis is 'acceptable' to them. So, not sure where we stand on that now.

I have heard other stories of CAMHS blaming the parents and its something that worries me a lot, especially as I have suffered from both depression and post-natal depression. Even with the Paeds dx I'm still terrified they are going to put it all down to bad parenting or my depression or something similar.

Ds has been much happier and settled over the past couple of days. He and his brother have played really nicely together and with their baby sister today, so I'm feeling a lot calmer. I know that a calmer me = a calmer ds1, but its sometimes so hard to break the negative cycle and get to that point.

Have you tried going to your GP and asking for a referral to a developmental Paediatrician? It seems to be a much faster, more direct route to dx for some people.

We have also found the calmer we are the calmer ds1 is but when it escalates its so hard to break that cycle as we are all so "wired".

By shear coincidence we have got an appointment with a paediatrician the end of march which was a "follow-up" from the CAMHS appointment back in 2008.

I am complying a folder with "evidence" of our sons behaviour and getting statements from people who have to be with him - Beaver leader, swim instructor, child minder.

Thats interesting to hear about the CAMHS blaming the parents. We stopped any further involvement with them originally, as I didn't like where it seemed to be heading i.e blaming me and "my anger" and suggesting family counselling in "partnership" with them.

So sorry to highjack your thread

moosemama, have read your thread with interest as a teacher.... your school should definitely be setting up an IEP for your son but, if they won't do that you could ask them for a PSP (pastoral support plan) which is less academic and more about the social/emotional aspects of school - the SENCo should know about these as they are often used for children who are at risk of exclusion (but I've used them successfully with children who have ASD).

Part of the PSP is to state what support the school will put in place to help a child and it would be perfectly acceptable to define a safe/quiet space for him to access at playtimes when he needs to. I've had children sitting in the school office with Lego/a book as part of their PSP (so someone knows where they are in the event of a fire), another has used the Head's office at lunchtimes and I've had a fair few come and hang out in my classroom doing reading/colouring/whatever works for them whilst I eat my sandwich and do some marking. I'm sure there are teachers who would be more than happy to supervise a child and their book!

Depending on how your LA works it may be possible for your son to receive some explicit anger management training from a behaviour outreach team which is something your SENCo should be able to tell you about. If not you could contact your local school for children with EBD and ask about it - they are bound to know (and may actually operate the outreach service themselves!).

Good luck.

Thank you SE13Mummy, its good to hear things from a teacher's perspective.

Sorry, just proof read and this is another mammoth post.

I think ds's current teacher would probably be willing to supervise him, as she has grown very fond of him. Unfortunately she is a supply teacher that his class has had since week 2 and even she doesn't know if she will be back after March 2nd.

I have never heard of a pastoral support plan and will definitely raise it with the SENCO as an option.

Dh and I were talking through the whole thing, again, last night and I think I should make it clear that we are trying to intervene early in what seems to be escalating behaviour. Ds has never hurt anyone prior to hitting the girl last week, despite the fact he has been hurt quite badly on several occasions by others. I have a little more information on the hitting incident as well now and it seems that the girl did indeed push ds over to the extent that he was floored, unfortunately the teacher only saw him retaliate and the girl denied pushing him first. To be fair, the teacher obviously didn't think it was very serious as she didn't inform me of what happened and I heard about it from ds himself at tea time. She also said that the school hasn't identified ds as a problem child in terms of his behaviour. I need to speak with her further about her use of the phrase 'lashing out' and find out exactly what's been going on, as a quick five minute conversation in the playground really isn't appropriate for this.

I am starting to think maybe I panicked and overreacted as I was so horrified that my ds would behave like that. OK so he fights with his brother sometimes, I get that, sibling rivalry. I just couldn't quite believe that he would hit out at someone else, let alone a girl like that.

Ds2 has also come out with a few hair-raising tales of how he is frequently being punched, kicked or pushed over in the playground and to be honest I am starting to get concerned that there is a culture problem at the school. Teachers deal with the worse incidents on an case by case basis but don't seem to 'join-the-dots' and see the pattern of bullying emerging. I am so sad to hear that my second little boy is now going through this as well, especially as it has had such a huge negative impact on ds1.

Its seems strange to me that a child can just run up to another, punch them in the stomach and then when they tell the teacher, be told "well keep away from him them". Unfortunately ds1 has learned the hard way that telling the teacher doesn't get him the help he needs and/or stop the bulling hurting him and he has apparently decided he needs to defend himself as noone else will.

I think anger management of some sort might be a really good idea, as he is just so full of anger at being bullied, but this usually comes out as shouting back rather than hitting.

It makes me so sad when I think of my two gentle little boys that went to school so trusting and ended up having their trust beaten out of them. They were both such quiet, gentle children before they started there and neither of them knew how to handle the harsh reality of the playground/classroom. It makes me feel like I have let them both down, because as their Mum, I should somehow have prepared them better.

We have had a good day today, ds1 seems back to his old self and has spent the day playing with his brother and baby sister without so much as a cross word between them. Its taken a whole week since leaving school for him to relax enough to 'come back to us'. It makes me question whether either boy is in the right place at the school, but there are no real alternatives around here so my only other option would be homeschool, which I don't think is right for them either.

We have even been looking at property in the Scottish islands this weekends, wondering whether a simpler life and smaller school (the one we looked at has only 30 pupils in total for the whole primary school) might be the way to go.

Sorry, got lost in a rant there, but have been doing a lot of thinking and its brought up more questions than answers.

moosemama, your DS sounds very similar to mine. He has very challenging behaviour and often gets goaded by other children. He has some triggers that wouldn't affect NT children so they are often go undetected.

I would ask about the behaviour outreach that SE13Mummy mentions. We had a referral to our behaviour outreach and got some 1:1 support for several months. It wasn't ideal as they didn't have much ASD training but they took an ABC approach (Antecedent, Behaviour, Consequence). It was useful because it showed the triggers for his behaviour and it became easier to understand his behaviour. I would also ask if there is an Autism Outreach team.

Like you, I also considered moving DS to a small school. In the end I couldn't - his behaviour was so awful on a trial day that they refused to take him! But they were understanding and encouraged me to go to an autism specialist (he hadn't been dxd yet). A smaller school may help, but it's also possible that you'd have access to fewer specialists. If you're going to go that route, it's worth asking around to see if anyone else has experience of what's available in the area.

I've had a lot of contact with CAMHS and I agree that I felt that they blamed the parents (or parent, in my case). I've had problems with depression too and they definitely wanted to focus on that. It was quite difficult getting a dx and I had to get a second opinion. DS had some therapy with them and I was tempted to stop it at times as it didn't seem appropriate, but it has been useful in terms of professional reports for statementing etc.

Just popping on to thank you all again for all your advice and support. Dh has also read the thread and we've had some good long talks as well. We are going to write a letter for the Head for first thing Monday morning and will request a meeting with him, the SENCO and ds's teacher.

On a more positive note, ds has been lovely now since Monday morning. He is honestly like a different child, compliant, polite and playing beautifully with his siblings. Back to himself really. It feels a bit like he was body snatched the past couple of weeks, but now he's been given back to us. Its great, but makes me feel so that he has to go back to school on Monday, for it (potentially) to start up all over again.

The only other thing we are wondering about is that, he has been gluten free since the end of November to address long-term digestive problems (we're talking over an hour at a time having diarrhea every day here) and he is being tested for coeliacs in July. We definitely felt that as well as a dramatic improvement in his stomach problems, there was a marked improvement in his behaviour and attention when we stopped the gluten, so that was a happy side-effect for him/us.

However, we have just found out that the local chip shop we use coats their chips in a wheat flour mix to stop them going brown and we have had chips from there three times in three weeks for various reasons. We are now wondering if this might have aggravated his behaviour as it is now just over two weeks since he last had chips from there.

So annoying really, as we buy our own gluten free chip/shop vinegar off the web as well as our own gf chip-shop style batter mix, but it seems we were poisoning him anyway inadvertently.

We have now found out a new chip shop has just opened in the next village, that offers a gluten free service (cooked on separate equipment and everything). Needless to say we'll be buying our chips from there in future.

Unfortunately, he has to go back onto gluten next month until his test at the beginning of July or he will test negative anyway. To say we are dreading it is an understatement and if his behaviour seems to take a huge nosedive, I seriously think we will have to consider forgoing the test and keeping him gf based on our own experience.

Thanks troublewithtalk, its good to know we aren't alone.

Actually I think it might be me putting him under the spotlight, as the school haven't raised his behaviour as an issue and his teacher said no-one at the school has identified him as having a problem behaviourally. Perhaps not so surprising when you think about the behaviour of the boys that were bullying him and they aren't an isolated case. He is just nowhere near in their league and if the staff have to deal with children behaving like that on a daily basis ds must seem like an angel by comparison. I am truly horrified really, as this is supposedly a well respected school in a really good area. I know bullying goes on everywhere, but never in my worse nightmare did I expect my children to have to deal with the kind of awful things these kids are dishing out.

I feel a bit that I overreacted, to essentially one incident which the school didn't think was 'bad enough' to report back to us.

My dh's best friend is engaged to lady who works within CAMHs in a neighbouring area. She has met ds1 and been told the whole story and says he wouldn't even be on their radar behaviourally speaking, as his behaviour would be considered fairly typical of a 7 nearly 8 year old boy. In her opinion, he hit someone back that pushed him over first and a lot of boys would do exactly the same, whether they had Aspergers or not.

I'm still concerned. I need to clarify with his teacher exactly what his behaviour has been like at school and whether or not there have been any other incidents. The only other one I am aware of is when he got sent out of class during literacy because he poked a girl in the shoulder with the rubber end of his pencil because she was laughing and teasing him about being clumsy and dropping things, so not exactly violent, but still undesirable behaviour that needs nipping in the bud.

Like I said, he has been lovely this week and even handled it well when I was shouty with them about the state of their bedroom this afternoon. This time it was me that displayed undesirable behaviour.

We already use a reward system at home (same system for both boys). They have a new chart each week and for each sticker they get they earn 5p. They both had new money boxes for christmas and once a week we give them their earnings in 5p pieces and they put them into their boxes. They are loving it, especially this week as the pair of them have been on target to bankrupt us.

I tried to get the school on board with a reward system last year, by asking the teacher to put a note or even just a smiley/sad face in the home/school diary every day, but it never happened. I think they are too busy to remember to do it every single day and it would need to be consistent for it to work.

We have been having a good time for near on 6 weeks now. Cant really believe it and we too, dread it ending - and we know it will one day, as it has before.

The house is so much calmer .....

you son sounds like my son when he was at that age , he is 13 now and still having problems though they do change as he gets older. I too was getting upset that I was losing my son and nothing I said to him seemed to work ( he was dx last year with Asperger's) In the end it was my attitude that had to change....I found that in the end I was getting more and more angry with him and feeling frustrated and at a loss especially when he hit puberty I've just learnt to chill out around him , not shout and get annoyed as this makes he's behaviour worse.Ds has a younger brother and a younger sister just like your son and I would say My DS behaviour really began to go down hill in yr 3, he was bullied and then became the bully and came up with the same things your son does....he still does that now and I think he will always be like that, I find now that I have to be very clever in my arguments with him now as he will always find an excuse. I went down the GP route too and have had experience with CAHMS (not that I found them any good) Since DX I have been left to get on with it... finding the help I need....though SENCO have been brilliant.Times will be difficult but it will always get better at some point.

i have been told to get in contact with sn-ips. Am going through the diagnosis process with my son but was told they can help