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.

Thanks moosemama for taking my post in the spirit in which it was intended

I searched out some social stories online this week and we have been through a few of them now. Each time it seems he has grasped the concept, taken on board good choices vs bad etc etc and understood the reasons behind it all, then afterwards he says something that makes it obvious he still doesn't believe it applies to him. Feels a bit like banging my head against a brick wall at the moment.

Thank you for being there Milady, I was at a very low ebb last night and I thought no-one would be around to listen so late at night. Your response was very much appreciated.

Moosemama,

The SENCO could actually make a Statement application to the LEA but I strongly suggest you do this instead of this person.

You can appeal in the even the LEA say no, the school cannot.

Do persevere at this. You have a bloody good case re a Statement application, please make this for your DS asap. You have a chance to get this for him, also you won't know unless you try.

You are your child's best - and only - advocate.

Thanks Attila, I had heard somewhere (probably on here) that its best to go for a Statement yourself rather than get the school to do it, but I wasn't sure why.

I had a look on the IPSEA site earlier today, at their proforma letters and I'm starting to get a better grasp of the process.

You are right about being his only advocate too. I read somewhere the other day (again probably on here) that we need to make sure we are at the hub of any decisions made regarding ds as we are just as, if not more, important than some of the other experts who will be involved, as none of them can say they are an expert in ds1.

Thought I was in for a quiet night as both boys went to bed over an hour ago, but ds1 has just been downstairs having a total stress out because he knew his nintendo was down here and he gets stressed if its not in his bedroom in its allotted place overnight. Gah! I need chocolate! (I will be the size of a house soon, if I don't find some other way of dealing with stress.)

Moose - If you need help with the statement application then please email me. It is important that you do this yourself, if the school do it then you are trusting them to make an accurate application which I wouldn't trust them to do tbh and as Attila says they can't appeal if it is rejected. You still can ask for an IEP and him to go onto the school SEN register - they should add him at School Action+ until a statement is in place. It would actually help with your statement application if you could get him onto the SEN register (preferably at SA+) before the school is contacted wrt your request for an assessment. With a referral to CAMHS already in place and a dx of Aspergers you should be able to get a statement in place reasonably quickly. There may be bumps in the road but I am confident you will be able to do it.

Sorry x-posted.

Sorry for loads of posts but another thing occured to me - it would be really useful if you could sit down and make a record of all of the incidents you can recall at school and exactly what the school did to respond to them. It would also be useful if you could write down anything you can think of that they have done to accomodate DS's needs in the time he has been there. As he isn't on the SEN register at present you would need to produce evidence that they have attempted to meet his needs within their own means before additional funding (which a statement provides) is allocated to him. As HKZ suggested I think your best plan of action would be to write a letter to school detailing your concerns and asking for a meeting with SENCO/Head/Classteacher to discuss getting him on SEN register. You could suggest this meeting happens on Thursday when you are in anyway as it really should be no issue for the Head and/or SENCO to see you at the same time. With him now having AS dx adding him to the register should be a given. I would then apply for the statement independently.

I have another question, sorry.

If we go ahead and manage to get a Statement. Is it possible that the secondary school that ds1's Junior feeds into might find a way to not give him a place?

I ask, because its the best state school 'educationally' in the borough and places are hotly contested.

Until now, I never worried that any of my children would get in. We are within walking distance and all the other teenagers in our street go there, so I made the assumption that we must be in the catchment area and would get our dc's in without a problem.

I know its a while away, who knows what will happen between now and then and it might be that the school won't suit him for some reason, but I'm already imagining the sobs and meltdowns when I have to tell him he's not going to the same school as his best friend and that's not even taking into account that all the other schools are a couple or more bus rides away.

Its so frustrating as part of the reason we moved back here was so that our dcs would go to excellent schools within easy walking distance of the house. I don't know enough (if anything) about the secondary admissions system to work out if this is going to adversely affect his chances.

Moose - the opposite should be the case. Without seeing the admissions criteria for that specific school it is hard to give you a definite answer but usually places are allocated on a distance doorstep to school basis where it is oversubscribed, with the only overiding factors being SEN/Looked After children. If he didn't get a place you would have every right to appeal esp since travel would be required to the other schools and I couldn't see you being unsuccessful given my experience of secondary appeals. Is it a standard comprehensive? Not a faith school for instance?

Thanks Lenni

There's no chance of seeing the Head, Class Teacher and SENCO together on Thursday as its during parent's evening and the evening is all booked back to back for the teacher. Also, the SENCO doesn't work Thursdays! Typical!

To be honest, I don't think the school has done anything to accommodate his needs up until now other than send him to the weekly SEAL group which all the children attend part of anyway. Other than that his teacher sits at his table so she can remind him to concentrate, but that's about it really.

Up until just before he started Juniors his teachers insisted he was doing fine and there were no issues to address. (We knew they were talking rubbish.) Add to that that he has only ever been in trouble less than a handful of times since he started at in their Nursery and I don't think we do have a very strong case for Statementing at present.

I will definitely ask for an urgent meeting with his teacher, head and SENCO though as I think the only way we are going to make any progress at all is to get them all together, state our case and make sure we are all singing from the same song sheet before we leave the room. I will draft a letter and take it in first thing on Monday morning asking that the head calls me to arrange the meeting asap.

No, its not a faith school. Have just checked their website. Surprising really as every single Junior school around here is either C of E or Catholic and our C of E school seems to be getting more 'faith' by the day.

Its a comprehensive and language college which has just opened its own sixth form.

The boy next door goes there and as far and seemed to just get a place automatically, as do most of the children from our primary.

To be honest, what I really want to do is run away to a deserted island and live there with my children away from all this crap.

Moose - the behaviour aspect isn't really an issue. He doesn't have to have been in trouble to be statemented. I think the problem that you may encounter is that the LA would refuse to do an assessment on the basis that the school haven't made sufficient attempt to respond within their own means. This obviously isn't your problem as you have continually raised the issue with them and they have failed to adequately respond. I still think you would have a good case. When he gets seen by CAMHS they may well advise you on statementing then, if not it would be a good opportunity to ask.

Sorry to get stroppy but the SENCO should be at parents evening even if it is his/her day off!

Oh Moose - I totally understand how you feel. I think you are doing so well to be dealing with all of this in such a short space of time, although I know you knew DS1 probably would get an AS dx, it is still a lot to deal with. And you have really managed the situation with him so well for years - you should be congratulating yourself on everything you've done for him so far.... will post this much so you know I haven't gone... haven't finished typing...

I know it is hard but if you can try to separate out being his mother and being his advocate, you will need to fight his corner to get him the help and support he is entitled to at school and you will probably have to continue to do that until he leaves education but it will be worth it and he will be fine in the end. As I've told you before I work with many academics who have AS and families and are very successful. He has got a bright future. At home you will nuture him and develop his social skills and help him to understand the world far better than school does. Home is the single most important factor in determining any child's outcomes in life and you are well equipped to make sure DS1 grows up to be a happy, successful young adult.

Good news on the school. I'm pretty certain then that there can be no caveats to his admission there. I asked as 'other' types of school can sometimes be a bit sneaky over admissions but I would hope that those loopholes would have been tied up by the time your DS gets to KS3.

they have families

Are you getting proper support from your DH on this atm?

Lenni, you are lovely.

I know what you are saying makes sense, but I don't feel like I'v been the best mum to him over the past couple of months. I've been so shouty and short and earlier this week he said he thought I didn't care about him because I am always cross. He has just been so much worse recently that I've struggled to cope with it day after day.

I worry which came first, the chicken and egg thing. Did me getting shouty and short tempered come first thus causing the degeneration in his behaviour, or did his behaviour degenerate come first, then I got shouty and snappy. I honestly don't know.

I am back on an even keel now and managing not to shout, but can't help feeling the damage has been done. I really hate myself at the moment.

He is reading this thread on his laptop as we type Lenni. Its taken a while, but he's totally on board with it all now.

I'm going to make this my last post tonight on the basis that I don't want all the other posters who are on the thread to be put off by my monologue as you need their support as much as my verbal diarrhoea.

Being shouty/short tempered might be raising the stress levels but it isn't going to have change how your DS's brain is wired. You are in no way responsible for the behaviour, although I do think you will find it much easier to cope if you can try to keep yourself on that even keel. I don't actually think it harms ASD children to see a bit of emotion and frustration sometimes, it helps them to understand how their actions affect others, he loves you and is attached to you and you are therefore in a unique position to teach him about his emotions.

You do need to get yourself some time away though, and not just this week but on a permanent regular basis. I think it may also be worth seeking support locally from other parents. NAS iirc have a list of local support networks. I know it is scary to get involved in those kind of things but once you have overcome the initial fears I think it would really help.

changed - I get the extra post on the basis of the typo. I am forever a pedant. While I'm correcting can I add the apostrophe after parents' for parents' evening please

Hi troublewithtalk

I thought I was on the right track with not punishing him for stuff that happens at school. It didn't feel right, but I knew that by keeping off last week he was going to miss the sanctions that the school put in place after his outburst (ie loss of playtime).

It would help if the school would let me know if there has been any problems though as I can't tell if he is getting worse/better or chugging along nicely if I don't have the full picture. His teacher didn't tell me anything about him 'lashing out' regularly until I went to see her after he had been home for three days.

He usually relaxes and shares/processes things when he is put to bed. He has a little ritual he likes to do about asking for the family to be kept safe and happy overnight and then it seems like he feels safe enough to unload. He hasn't been doing this as much recently though, but has been tending to bottle things up instead.

I think it might be like you said, he doesn't want to make me sad. He was so lovely when I cried yesterday, he came and put his arms around me and said "Why are you crying? Please don't be sad Mummy, I don't want to make you sad?". We had a hug and I explained that I know he doesn't want to make me sad, but sometimes when he shouts at me and says unkind things it upsets me, so it would be good if we could try and help him to be able to stop doing that. He promised to try - then five minutes later was back shouting at me for something and nothing again (fortunately I saw the irony of the situation and found it funny that time).

No we haven't got one of those. He has the standard Juniors diary and I am told by his teachers and other parents that we are the only people that use it. Its by using his diary that we've been able to improve his organisational skills.

Why were you turned down for CAMHS. Did you go for assessment via the school or gp?