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Help needed

(31 Posts)
CyrstalStar Thu 23-May-13 14:11:07

Please can anyone tell me what the difference Iain terms of help at a mainstream school between having an IEP and being on school action or school action plus. It may not be a clear cut difference so forgive me if this is not making sense. My ds is getting an IEP but no SChool action . Does this mean any less help will be offered, is it about no outside help. Please can someone explain. Thank you

KeepOnKeepingOn1 Fri 24-May-13 13:32:46

You need to do what works best for you and DS. It sounds like both you and DH are stressed (understandably) but this means that DS is going to be living in a stressful environment and so is 'primed' to react extremely to day to day things which then increases the stress you and DH experience. You absolutely need to find techniques that work for you but it may be that you need to bring down the stress levels of everyone to give them the best possible chance of success.

DS2 is highly demand avoidant but usually this is passive resistance. He is more demand avoidant the more stressed he and the rest of the family are. One sure fire way to elevate everybody's stress is to ask DS2 to do or not do something. I have to get him to do what I want him to do without actually asking him to do it. That way I praise him when he has done the task instead of a 15 minute battle to get him to do it. If he is engrossed in something else he will ignore the request completely and not even respond to his name. If not engrossed he will also ignore the request - any request it's just more noticeable with the morning/bedtime/bathtime/teeth-cleaning routines - and look for/find something else that he 'has' to do.

Sometimes when he is particularly resistant this is non-verbal - handing him his toothbrush but not telling him to brush his teeth - and sometimes this is verbal 'clean your teeth, thank you' rather than the request 'please clean your teeth'. This is why visual prompts are useful - you are not asking him to do something he is just following the routine.

Ipod addiction is also an issue for DS2 and is my key carrot. But day to day routines are the biggest headache as DS2 does not see them as a reward. I use the Ipod as a lure 'when you have done X, then you can have your Ipod'.

StarlightMcKenzie Fri 24-May-13 12:32:35

My ds has communication difficulties that means a detailed discussion won't be understood very easily, so it is easier to just give bullet point rules and tell him what they are.

StarlightMcKenzie Fri 24-May-13 12:31:49

This is what I would do with the situation you describe if it was happening with DS. (This is to give you ideas, not claim it as the right way).

I would forget about the 'things' and try and define the behaviour. The behaviour is that ds becomes aggressive when being asked to stop a highly preferred activity.

Then there are few things I might try.

One is: Remove the highly preferred activity completely for a while. Introduce a preferred activity that isn't so 'addictive' and practice short slots of the activity being stopped with a reward of a highly motivational toy/piece of food/praise, whatever. So what you are practising first, is him stopping an activity when you say so, of something he isn't that bothered about stopping, and then when you have that level of 'control' you can increase the level of preference, finally introducing back the phone.

Another way is to simply start with the phone, and practice stopping him from using it purely for the practice when it matters much less whether he does or not (that will reduce the anxiety on you as you are just practising the skill, not trying to get him to learn/complete the skill at the same time as not be late for school etc.). So let him have it. Tell him it is for 5 minutes only. After 5 minutes remove it. He can have it back in 10 minutes if he hands it without complaint. If he complains a little it will be 15 minutes, if a lot, half an hour. You can set a timer!?

Overall, I would prefer the former strategy as this is not phone-specific but a general lesson about doing as you have asked without aggression, and for a more 'addictive' activity like a phone it will be harder for him to control his emotional state without having had a lot of practice in less stressful situations.

PolterGoose Fri 24-May-13 12:05:20

Message withdrawn at poster's request.

KeepOnKeepingOn1 Fri 24-May-13 11:55:03

Sorry you are having such a hard time - DS2 (7) hit me yesterday morning when he refused to give up his Ipod after a countdown. I physically took it off him rather than him handing it to me (I had always wondered what would happen if I got to 5 and he hadn't given it to me). He doesn't have meltdowns though.

DS1 on the other hand has serious meltdowns and is a hitter (I get off lightly but he punches, kicks, hits on the head with the heel of his shoe and has threatened DH with a knife several times). I get off lightly because I learned years ago that DS1 was only going to get bigger and stronger. He still has meltdowns (12) because I don't control the world and sometimes, for example, next-day delivery does not actually mean next day and sometimes it rains. But there is some stuff that I can control. I agree with the others about visual timetables, countdowns etc.

Number 1 preventative measure is mood management - keep things calm and happy (not easy when you are seething). If there are TV comedies that he likes (you've been framed, mr bean etc) and you watch together, recall funny bits. If his 'happy place' is different use that to conjure a shared image. Do this BEFORE you give him instructions and then whilst he is talking walk to the task (getting dressed) and either slip in instructions if he remains calm when you do this or hand the next item to clothing to him as you share a happy memory. Don't worry - this is not the desired endpoint but is just a stage. This is good for him and good for you. Removes daily confrontation that leads to not liking your child sad

DH needs to wise up and get with the programme!

CyrstalStar Fri 24-May-13 11:34:51

Just thinking...dangerous! What do you think I should do for example when ds has had his after school/early evening phone time and then starts hitting or throwing things when time is up. I give him plenty of warnings that time is ending and show him the clock going round etc but he still freaks. He throw a drink over his sister yesterday when this happened. Should I then just say no more phone time at all today/tonight. Perhaps this is where the visual stuff will help also. Perhaps I am a bit useless if I'm asking this stuff I just don't want to make him worse and you guys kn ow what your doing as you all sound very experienced with these matters. Ill try the visuals and stick to it. I will try the scaled list of progressive consequences.
The other day ds opened the car door whilst I was driving down the road due to his sister being on the phone and him wanting it. I was doing 40mph he just said right I'm getting out and opened the door. Never will happen again as child lock will always be on from now on. Luckily no one was

NeedToMoan Fri 24-May-13 11:26:19

Hiya bless you, it doesn't help when the DH isn't on board. I don't think my DH is fully taken on board that our son has ASD yet. In some ways, he is fantastically good with him and much better at taking him out than I am and a good practical help at home but with DS at home, aaagh. Unfortunately, my DH is quite sensitive to noise (trait?!!) and my DS is NOISY, but much of it I think is involuntary and although it drives me crazy, what drives me even more crazy is DH droning, "DS be quiet" "DS too much noise". I have joked that I will buy DH some ear defenders but I'm only half joking really. We are booked to go on Early Bird course in Sept and I think that will give my DH a much better insight into what is really going on here. We are also waiting to see if DS will get a place at special school and hopefully this will reduce his anxiety levels. You have to keep talking about it, maybe start printing some info off for him, just a few pages at a time so he can start to understand a bit better. I feel your pain though. It's early days since our diagnosis so I am being patient with DH but I won't be patient forever.

CyrstalStar Fri 24-May-13 11:17:57

Thanks for all your support its amazing how much this site helps me. I think I do know I'm not a shit parent and dh putting me down is not a new thing so I expect it really. It's just when things are so wrong and someone is constantly in your ear about crap u r sometimes u question yourself. And because he is worse with me I think that's why I worried. I just had a really bad morning. I don't want to feel sorry for me though that's selfish I need to get on with it. There's many parents in my boat and the main issue is my ds not how rubbish I feel. I'm going to take on board all of your comments. I have been thinking to do the routine thing on laminated card I will get it sorted over half term. Obvs the routine that is mainly verbal is not working and why would it. I'm going to look at that book poltergoose-thx. I do remove the phone out of his sight, sometimes he is too quick and gets it then throws it across the room when I ask for it back or go to get it back. He does not have game time until he is ready for school. I will try getting him to be calm for the phone back as we just have major meltdowns then he gets the phone nine times out of ten on way to school, but def only after he is ready and we have done everything. However it then takes 15 mins to get it back at school and then sometimes another hitting session. Just frustration I guess. I haven't done an early bird course or know about autism outreach. Will look into it. Dh has been to most of meetings about ds. He is just not a understanding person most of the time. I think he has anger issues himself actually. Never have they been directed at ds though but I guess now ds is pushing his buttons it is different. I'm
Going to find a strategie like the ones above and stick to it. Ill just have to ignore dh hopefully it will get better and he will see. Thanks all I really appreciate all your valuable advice and help when feeling so low x

Badvoc Fri 24-May-13 10:50:22

You aren't a shit parent.
Listen to star and pg.

StarlightMcKenzie Fri 24-May-13 10:18:54

And everything PG said.

You do know you're not a shit parent don't you. Your DH is probably just deflecting because he is struggling like you.

You can get on top of the behaviour, but you'll have to find the information to do so and once you have decided on a strategy stick with it for some time, and if possible measure the outcomes. Your DH will have to support you or stay out of the way though. You can't be undermined.

PolterGoose Fri 24-May-13 10:08:52

Message withdrawn at poster's request.

StarlightMcKenzie Fri 24-May-13 10:02:44

All activities that he likes i.e phone, pens even if he likes drawing, put out of reach.

EVERYTHING he likes has to be earned and given to him by you.

At first he'll go crazy but as soon as you get that first 10 seconds of calm give him what he wants immediately.

DS understands that 10mins is longer that 5 so if he wants something and I say 'in a minute' and he screams/hits whatever. I say, right, '5 minutes', if he continues, 'right 10mins' etc. and I stick to it.

I also have a thinking step. If I ask him to go and he refuses or argues (just once) then it is 'right bed'. If he refuses it is 'ds go to bed on own or mummy help?'. Next step is pjs on, then ds do pjs on own or mummy do it?.

So we have a scaled list of progressively worse consequences, but they have been chosen to cooincide with what matters to him. He would never behave for stickers for example.

CyrstalStar Fri 24-May-13 09:45:13

Thanks all. I'm trying to work out if its coping with school that's causing the issues at home or not. It's only when he needs to do something like clean teeth, bath, dress, etc. the house is being wrecked and I'm really at my witts end with being hit. This morning he punched me on the nose when I was in bed before I had even virtually opened my eyes. He had come into my bed and taken my phone at 6am to play a game on it I woke at 7am and took the phone from him as we needed to get up and that was his reaction. I just said no phone until we have everything else done and your ready for school. Then bumf right on the nose, it's amazing how hard a 6 year old can actually hit I'm learning. Throwing and hitting carried on all morning in spurts of having to change activity. IS THIS NORMAL or is it me. My dh doesn't cope well and he is blaming me saying its my fault and I'm a crap mother! I have lots of family who support me but I've cried my eyes out this morning. When my ds behaves like this I try to ignore it if I can but sometimes it's not possible and I firmly tell him he must not do this or that and that if he is angry he can go and sit quietly somewhere until he feels better. It takes about 25 mins to get him upstairs to clean his teeth each morning, sometimes I have to actually use every bit if strength in my body to lift him against his will when we are going to be late for school. My dh just gets angry with him and shouts at him and smacks his bum but this makes it worse . I've told dh that he can't do that, I'm trying to teach him not to be violent and he is showing aggression at him when he is shouting , I mean really shouting, it's scary, and smacking him. How do u teach a child to stop being violent like that. Anyhow dh says if I was more like that he would stop and I need to get some balls. Tbh ds did stop smashing up the house when his dad came down like the Incredible Hulk and went biserk at him. I just think that dealing with him like that won't help in the end. I don't know what to do. Any advice even if its negative towards me I would like to hear . Thanks

Badvoc Fri 24-May-13 09:04:27

IEPs are just admin lists ime.
Help your child yourself.
Good luck

crazeelaydee Thu 23-May-13 22:46:07

Hello again, My Ds's behaviour at home rapidly deteriorated in yr 1 + 2 (very out of character) I later found out this was due to a lack of support in the class room, the CT's were not using the strategies/suggestions given from the outside agencies yet he had an help everyone involved but they chose to ignore it confused. After I started to 'shout' (my DS's GP told me he who shouts loudest gets results - long story!grin) he began to improve again at home, and also at school. Since then I have been told to use his reactions when he comes home as a sign of if things are being done properly at school hmm. I obviously don't know if this would be the same for your DS but after finding out things which have been used as strategies to help my DS and watching him at home it rings true for him.

CyrstalStar Thu 23-May-13 21:41:52

She cares about how well her school is performing statistically and that's it. It's a huge school that is now more like a business than anything else. It has lower than average special needs children in it although it is a much larger than average school.

CyrstalStar Thu 23-May-13 21:39:16

Head teacher really doesn't care about her sen children that is a well known fact. Sadly.

Handywoman Thu 23-May-13 20:51:11

I think SA and SA+ and IEP may give a false impression as to the level of 'need' or the amount of intervention. My dd2 has been on SA+ for 2years, now has an IEP which all looks fine. But what is needed more than anything is a supportive head teacher who has an ethos of actually giving a monkeys and not make a song and dance about the most mediocre accommodations. I ended up writing to the school Govs just to have the timer removed from tasks on the online education portal. True Actual Fact.

That said, if the eventual outcome is application for SA, I think it is helpful to have evidence that some sort of 'graduated response' has taken place showing school has already tried lots of things.

CyrstalStar Thu 23-May-13 20:49:49


StarlightMcKenzie Thu 23-May-13 20:23:07

I know the same as you, just a few years down the line.

You'll see. grin wink

CyrstalStar Thu 23-May-13 20:22:22

Starlightmckenzie I forgot to say someone told me to come on mumsnet when I was seeking advice for private diagnosis months ago, I cannot remember who now but they said you knew a lot and I could find you on here!

CyrstalStar Thu 23-May-13 20:19:39

That's Star..upon our next meeting after half term I'm going to ask them all this. Thank you.

StarlightMcKenzie Thu 23-May-13 19:58:16

YOU can ask for the school file under the data protection act, as well as any communications or information held electronically.

If his difficulties/deficits are mostly at playtime then this is where his education needs to be prioritised. What are they doing to not only ensure he is safe at this time and coping, but actively learning social skills, participating etc. If he is struggling to follow instructions, what work is being done on this, how regularly and by whom?

This should be the information in the IEP.

StarlightMcKenzie Thu 23-May-13 19:37:29

No. An IEP isn't of any use to your ds unless it is both SMART and adhered to.

DS is in his 5th school placement and I have never seen a SMART IEP though I'm told that some schools do know how to do them.

The R in SMART should mean relevant. It is all very well teaching your ds how to open the girls toilet door, but that will never be useful to him for example. And no point teaching him how to tie shoe laces if he needs to learn how to put his shoes on.

CyrstalStar Thu 23-May-13 19:32:00

Thanks for these helpful replies. I wish I knew as much as you do. I'm ploughing through the code of practice slowly. So I should be happy school have offered an IEP for my hfa Ds or at least wait and see if it actually helps him. The school say that they have no funding to do anything else. Before the school knew about his HFA diagnosis they already gave him small group help as his levels are a low at 1b in year 2. So are half of the boys in the class who are NT. They also recognise his needs socially and have said they will try help in with friends at playtime etc. Do you think this is adequate ? Also the nhs have referred us to a SALT. He struggles to follow instructions and has very poor verbal communication. But as the school day is so structured they say they see him struggling at times in class but mostly he is conforming due to the rigid routine and as everyone else in the class is doing it he follows suit. I think he is struggling a lot more than they realise. When he comes home he is being very violent when tasks such as bed, bath, cleaning, etc are needing to be done. Am I expecting too much from the school to want them to be doing more, such as assistance from autism advisory. Also I'm not sure the school are telling me the truth as apparently he has been having group sessions for a while and is on the sen register but I knew nothing about this. It has only been recently that I have asking for his levels etc and told them about the diagnosis and suddenly they have been doing all this stuff for ages.

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