Starting again with DS2; reposted from parenting

[OrmIrian]

He's 8. He on the autistic spectrum and has mild dyspraxia but not what most people who recognise as SN. He will argue black is white. In fact he'd argue over the exact shade of black!

DH and I are really struggling with him. DS2 and DD struggle with him. DS1 makes loads of effort to do things with him and for him but eventually loses patience. DD doesn't waste time and loses patience with him straightaway DH and I have started shouting at him - which was never our way before. I hate it. DS2 hates it and I am sure he is less affectionate with us now. It is heartbreaking.

What really shocked me was when the SENCO said she could offer me was parenting classes if our relationship had broken down to such an extent. It really made me think about how we need to change things.

So I had a chat with DH this morning. Rules are going to be:

1. Early nights. This is one of the main issues. He won't/can't go to sleep. We can't make him sleep but we can be firmer making him go to bed and stay there.

1. NO shouting. Ever. It doesn't help and it makes everyone on edge. Consistency and firmness, yes, shouting no.

1. More physical affection. More hugs. They do help to dissipate the anger.

1. Making up after every row. Touching base so we remember that we are on the same side.

Any more tips?

Hmmm, I think you need to get to the root causes of the behaviour tbh.

No point in hugging a child who is oversensitive to hugging and finds it painful. No point in making a child lie in his bed for hours upon end if the hormones in his body will just not allow him to sleep.

You need to make a list of things that concern you first. The things that trigger your anger. The things that you think ds needs to learn in order to function in society without pissing people off. The skills he will need to be trained in etc etc.

What do school say about him?

have you tried melatonin for the sleep issues?

does your ds2 have a paed? I think you need it prescribed by a paed, but haven't used it myself, so not entirely sure.

but otherwise, yes - in bed, and calm is better than not (we went through this with dd1, who did not sleep until about 10.30 or so some nights (she wa sonly about 4!) but she used to be ok by herself, with a few books to leaf through.

it is easy to fall into the cycle of shouting - most of us here ahve done it. I know I have - and it does just escalate. knowing you are getting into this is the first part, and well done for trying ot address it. identify your trggers too - it may be your ds with the ASD< but you will have triggers which set you off onto the cycle of shouting. trying to work out in advance what they are, and how to deal with them might help.

it sounds a bit silly, but one thing we have done with dd2 (NT, but hovers around the edge of the spectrum) is role play through some situations which were previously getting us all snarlign at each other. pick a calm time, and try to work through a situation which would (if it arose in normal daily life) usually spark off a row/upset/whatever. giving your ds (and ds1, and dd as well) the right phrases to use, in a non-stressful situation might help avoid the inflamation. maybe something like a 'time out' phrase they can all use when they feel they are getting stressed? the other children have to always take heed and back off (appropriate rewards for doing so).

some posters have had success with an 'emotional volcano' - a scale of 1-10, with appropriate colouring, as a visible reminder of how the person is feeling - stick it on the fridge, and getting people to recognise (and I mean everyone, not just ds2 - part of the identifying triggers bit) exactly how they are feeling, and be able to tell the others is very important.

well done for trying to turn this around. it can be done, but it can be tricky feeling your way through.

The school say that he is the same as plenty of other children they see They don't seem to want to commit to anything. He is getting extra help with the academic side - ie hand writing and maths. She suggested the GP was the next port of call. I guess he is.

I just want to ensure that my reactions to him aren't making him worse. He is OK with hugs - will duck out the way if he doesn't want one.

"No point in making a child lie in his bed for hours upon end if the hormones in his body will just not allow him to sleep." Yes, I guess so but he can read, draw, play imaginary games with his teddies etc

OK, I see I need to approach the GP. But it's hard when the school seem to downplay it, DH downplays it (he works with kids with EBD so DS2 seems very small beer in comparison I guess) and it's only me that seems to realise things aren't right.

One of my main triggers is depression. I came off my ADs last year but am getting less and less tolerant so have started taking them again. Don't see I have much choice.

At bedtime I've always let DS2 (ASD) potter about so long as he stays upstairs and doesn't disturb his brothers. He's allowed lego, books, origami etc but no electronics. He just isn't tired, but as long as he is fairly quiet I don't worry. Does he have his own room?

Definitely consistency, though it doesn't work as well as with a NT child.

Pick your battles, I decide which behaviours are anti social and which simply annoying.

Try not to Don't get annoyed by behaviours he can't help. Not that you don't try to change them, of course.

I've also taken the easy route sometimes, just to make life easier and have forgiven myself for it. Eg, use of a DS, or iPod touch to keep him happy in restaurants or waiting rooms. I let him leave family events early and do his thing so tat the other 2 can still enjoy themselves.

Orm, I have a dd (age 13) who is the same and it is so tiring! She argues over everything! Even if you agree with her argument then she argues back to what was said originally! She has, I would say 10 - 20 meltdowns a day minimum! It's worse when she is more anxious and she desperately has to be in control of everything but if handed the control doesn't want it/know what to do with it! School have identified the same behaviours.

We started the magic 123 parenting course last week (2nd one tonight) which is meant to work well with kids with ADHD/ASD and oppositional behaviour and is all about not getting dragged in to the arguments. We also have a lot of shouting in our house and DS2 (aged 4) is frightened by shouting and it makes him hide so we have to find something that works or all our sakes.

I wish CAMHS would help dd with her anxiety as I'm sure that is the cause of her behaviour but they won't support dd until we have diagnosis! My ds1 (age 11) is so frustrated by dd that he barely speaks to her due to her volatility and aggression and it's heartbreaking to see.

Thankyou.

ellen - DS2 potters about a lot and understands the upstairs only rule. Problem is he gets distracted by DS1 who will be playing his guitar, on his xbox or using his laptop and never seems to actually switch off. I am trying to get DS1 on side - he heart's in the right place regarding his little brother and loves him to bits.

sazale - your DD sounds so familiar! Even if you say yes to something he wants he will complain about the way you said it, or pick on a figure of speech he finds odd, or even say 'I was sure you'd say no, why didn't you say no, you'd normally say no'.... So then you have to come up with a reason why he can have ice-cream/watch a DVD/stop doing his hw, when last time you said no! And if the reason isn't good enough we'll have an argument about that too. The only way to deal with it is to laugh about it but even that doesn't work all the time and sometimes you don't feel like laughing. Course sounds interesting. I must admit I worry that he won't get a diagnosis - his problems are so mild really, hence my attempts to 'fix' the way we react rather than to fix him.

Orm you might find 21st Century Boys by Sue Palmer interesting. She discusses borderline as/adhd boys and how current life styles and institution make quite normal male characteristics a problem.

I agree with you that we can only change our own approach to others.

I have done more than my fair share of shouting BTW. We have seen a behavioral therapist, to help improve ds's behaviours, which of course has really been about our responses and behaviours and habits.

Thanks oodles. I'll have a look for that book

Just read an excerpt on Amazon - the bit about Kevin is so horribly sad.

And so pertinent to us

Ambitous about Autism based n Highgate do a one/two day course on challenging behavior based on ABA principles. I think the next one is at the beginning of March btw. They also do a communication course.

www.ambitiousaboutautism.org.uk/page/what_we_do/training/training_programme.cfm

It's all ABA based so very, very easy to customise to suit your personal lil darlings personal "quirks".

If you can get to them, they aren't too expensive and helped me when noone else would! (A 12 month waiting list is no fooking good when you are in crisis).

They are about the only place I've found:-

1/Does stuff for HF kids (not all asd kids are the same local LA!)
2/Is cheap enough for me
3/ Can self refer as I need to as they repeat the courses at fairly frequent intervals.

Sazale - It took A LOT of work on the ASD sensory stuff and time to process before we saw a difference - especially for school. The sensory stuff caused a lot of the anxiety and noone can be reasoned with in "fight or flight" mode. An OT referral might yield results. I can see 123 Magic helping a bit for "pure" adhd but this Mum's jury is still out for ASD behavioral issues. The 2nd chapter of the 123 Magic book is quite useful to stop you melting down sometimes though ; )

Orm, I worry too that my dd won't get a diagnosis. She can hold things together in the right environment (when she's on her own with professionals she doesn't know) for long enough to get through an appointment. She recently had ados test and didn't score high enough for asd but the people who delivered the test indicated that they saw adhd traits and needs further investigation. Camhs ruled out adhd 12 months ago!! We see clinical psych on the 23rd for diagnosis (or not)! The fortunate thing is we have schools support as dd had complete meltdown with school in October and could no longer cope. She isn't in normal classes and is in the student support unit. They now get some of the behaviours we get at home and have referred to ed psych as don't know what to do! She's not progressed academically for at least a year and has only really progressed in maths since leaving primary. Any little thing in a conversation or any action someone does or doesn't do can also trigger it. My 4 year old missed the letter c out of his name whilst writing on a birthday card. This resulted in her scribbling all over the card she had wrote and a full on temper tantrum with her throwing herself on the floor etc! I'd pulled the settee out, on another occasion, to clean under it and then when she later sat on it she moaned that it neede moving an inch to the left as it wasn't in the right place and had a full on meltdown over that!

Bochead, I'm also not sure if the 123 magic will work but I'm defo going to try it! My concern is that although her behaviour is constantly hard work, it's not naughtiness! It's 99% anxiety based meltdowns. So if she has no control over the behaviour how can she stop it? Camhs kept offering us stuff after we complained about the lack of support and this was the best of what was offered and didn't want to appear un-cooperative! It isn't us that need support but dd with her anxiety but it's like hitting your head against a brick wall!! She is in fight or flight mode all the time! School have mentioned this also! She had OT in July who don't give sensory input. Said she has impaired motor skills and discharged!! Has had sensory profile done via camhs who said if could diagnose sensory processi g disorder, would but as condition doesn't exist in DSM manual, can't! No support just go away, read a website and pay for private!

Orm do read the book if you can. It's message (for parents of borderline kids) is actually very positive and empowering.

Sazale I don't know if this will make you feel any better, but even with a dx we have had no support and just gone private. Have you read The Out of Sync Child by Carol Kranowitz? I got as much if not more advice on sensory processing than from nhs OT.

I've just bought it and need to make time to read it! Are you seeing private OT? The nearest one to us who do sensory is over an hours drive away and when we went for initial visit said that she was so severely impacted that they wouldn't do the normal assessment but that she would need 2 full weeks (approx 50 hours) of intensive treatment before they could do assessment! This would be at a reduced cost of £55 per hour! Although I'd heard good things about the place I was concerned with this. Also it would have been impossible to be there every day for 2 weeks with 2 other children, I don't drive and a self employed partner who doesn't get paid if doesn't work! I am now considering g retained reflex therapy. I'm less focused on the diagnosis now but was hoping it may open up her schooling options.

Sorry not intensive treatment but the sessions would be intensive assessment sessions due to her complexity!

Sazale - No professional has yet convinced me that the phrase "complex needs" isn't code for "we haven't got a clue what to advise you!".

The sensory stuff in asd seems much overlooked but has a major impact in anxiety and is REALLY hard to crack if you don't know what you are looking for. I found being taught the aba observation methods at the intro to autism course at the link above the singe most helpful thing in helping me establish wtf DS's triggers for melt downs were. (Once I'd identified those triggers getting school and everyone else to take them seriously was a whole new battle mind you). In the long run it's been worth it as he's thriving and happy - even went to a birthday party on Sunday without incident.

I think a developmental pead can diagnose sensory processing disorder & if your trust can't help - demand a referral outside the local of your own PCT to someone that can! Caudwell and Cerebra may pay for private OT (something I'm currently investigating as our NHS OT let us down).

DS was also suspected adhd, but in reality, now we've sorted the anxiety the adhd stuff has disapeared. It's that "fight or flight" thing you see masks everything else to observers.

Some things that have helped DS with calming himself

1/ His dog - animals (any pet will do for some it's a hamster or cat, other kids love horse riding). Cuddling the dog for an hour undisturbed usually works.
2/His veggie patch - a good peaceful potter for an hour or two really helped him
3/ Walks in low sensory, calming places - deserted beaches, parks, woodland etc
4/ We tried yoga - it isn't for us but helped several other kids in the group
5/His bedroom is painted magnolia, with white furniture/bed/textiles and no toys/clutter etc apart from his plasma lamp. Not even a clock as h can't stand the ticking. He asks to retreat there when everything gets too much for him sometimes.

Hi sazale we have seen private behavioral therapist, the sensory enrichment is diy, like Bochead above.

Ds is under responsive and lacking in balance and co-ordination. He would love a pet bit now isn't quite the time.

Stuff that works for ds:
1 masses of exercise to wake him up and to calm him down
2 masses of cuddles and massage, he really cravestouch and it calms him down if hes anxious
3 balance and coordination stuff like tots gymnastics, laying the table, helping in the

Oops posted by accident but you get the picture