Aspergers/ASD support thread

skyrocket

well I read the book 'Is that my child' by Robin Pauc and it details a few recipes in the back of the book but these are a bit limited when it comes to day to day stuff and keeping it varied.
I searched on Amazon for an additive free cook book but surprisingly there was very little there!
I give him Vogels bread as this is free from additives etc, and steamed veg, organic where I can afford it, lots of salmon etc. as much fruit as he wants. I make things like shepherds pie etc and fish pie with carrots and peas etc. But i'm out of ideas now and fed up with the same recipes (and so is he!)

blue_monkey_2

Hi everyone, good to hear from you snaggles, I was going to post to see if all is OK as I had not seen any posts from you. So news about Camhs and the school then, sorry. How is Ryan doing at the moment.

Anyone think that the full moon has something to do with behaviour???

I've had a bad day with Ryan, it started off this am when I was dragged from the school queue by someone saying 'someones child is hitting the other kids in the face with sticks making them cry, is it yours?' So yes, of course it was. I was so embarrased but I apologised and someone else else 'I think it was an accident he did not intend to do it' and I explained that he did not understand he was hurting them and then after I dropped DD of I told another lady what is happening with him. Everyone else just gave me filthy looks but I guess that means I have to keep him on the reins now when waiting to get in the school. I just grabbed him and tried to make him apologise to the boy (who was crying and Ryan would not apologise!) and then I had to drag him into school, he refused to get his shoes on or to carry his book bag and I left him on the floor making that fake moaning cry. They told me they had a 'bad morning' with him and that it has been the first for a long time. However, just to make sure all of his good points are fresh in their minds I got my appointment from Paeds today - for TOMORROW!! And his teacher has a questionaire to fill in. no good her filling it in when he has been very good for 3 weeks is there! See, everything for a reason!! Hubby is away and I have to pull DD out of school a little earlier to get there but hurrah! The worst bit is that it means I'll hit rush hour traffic on the way home and a 20 minute journey is going to take an hour and a half but I can't put this off now. HV is referring him for SALT today as well. So all good there.

On another note, after Fridays disappointing letter from the council about points I got another yesterday from a nominations officer and they have upped my points and are doing a home visit next Monday. I had asked her what happened and when did we present our homeless case and she told me the day I got the date for court, however then she said 'but hold on, you are on the list for a home visit so I will arrange that for you'. We was getting the kids play equipment into storage this weekend but now it will wait as I have asked they consider me for an enclosed garden otherwise Ryan will get out and because of the trampoline and because I need to keep an eye on him . I can also show them the damage he has done to the house here that would be unacceptable in a private let (it would mean he needs full time constant care to ensure no damage is done whatsoever - which is impossible. Can you imagine??).

Anyhows so yes, everything has come at once for me and it is going to be a very busy week, but fingers crossed it all goes the way we need it to.

Ooh, just remembered, I told the HV that council were coming Monday and she told me to make sure I gave Ryan some nice red sweets before her visit, LOL. I told her she was very naughty. Questions is, could I inflict that misery on myself for the rest of the day though, LOL!!

blue_monkey_2

yes, I agree with the diet and I do try and make as much of it as I can myself but our budget does not expand to organic. I do give him food from Birds Eye as they are supposed to be free of additives and no ready meals. I do give him sweets but I not have noticed any direct pattern - he is the same with them as without them tbh - he even has good days when he has sweets so maybe it is down to something else. Without taking out the major foods groups I don't think I can pin this down and we are not ready for this just yet. I'd have to get past the tantrums of him not being able to have them anymore, LOL. If my kids have snacks I do tend to give them more in the way of fresh fruit though if that helps. Ooh and I do give them popcorm as well, but the microwave butterkist one as it has less saturated fats than making popcorn yourself.

blue_monkey_2

Morning everyone,

Just a quick post before I get on, hospital today - I am very nervous, LOL, and it is not even for me. I mentioned yesterday to DD that I had to get her early from school as Ryan had to go to hosiptal and he overheard and asked why and then he flat refused he was going. So I have now said it is for me and as it is going to be me doing most of the talking I should get away with that, LOL.

But, I did then ponder last night that the school had to also fill out a form for the hospital, they had the same questions as I have, but they are fab, I gave it to them at 3.15 last night and I have had it back this morning at 8.50 to take with me today. It is nice that they have given us this support. I have had a read through on the way home - like you do - and their answers are almost like for like to mine. I was worried that if they were contrastingly different then he would be disregarded but they are almost the same with the odd thing differeing, like here he steals food from cupboards and at school he does not but they will get this. And bearing in mind they have him for under 2.5 hours a day I thought this was quite good and has left me feeling fairly optimistic in getting it sorted out.

The teacher did tell me yesterday that they now know how to treat him to get the best reaction, yesterday at tidy up time they saw he was on the PC and let him continue to play with it as he was quiet and out of the way rather than drag him from it and risk a tantrum. So it is good they can realise the things that stop him having a meltdown. He did go for my friends little boy yesterday, the little boy tried to move his train and I saw his fist clench and go up, he had his own hand in his mouth biting himself (he always does this when attacking someone else) but I managed to get my hand between him and the little lad. No-one else saw it but I did say sorry.

Yesterday was a bad day, today has ben a bad day. Someone has suggested they might be picking up on the move stuff but I have decided I'll be telling the kids we are moving IF we get a place to live, if we do not and we have to go into a hostel I will tell them on the day that we have to move that we are having a little holiday break - and that should swing things.

I don't know what is going on at the moment tbh as both kids have been vile. I feel emotionally and physically exhausted and drained by it all. Ryan managed to get into DD room early yesterday morning and he woke her, (Btw, if anyone else has these problems, we got DD a high sleeper as he cannot get on the bed without disturbing her and he wakes her before launching a full on attack and her being awake actually stops this as she can call me in there. It sounds weird but it works!!) anyway, he went in and woke her up by poking her eyes so that was a good start to the day.

And if my husband rings me once more complaining that he is bored (he is away on a course) as there is nothing on the TV I will not be impressed!! I have had an hours tantrum this morning full on screaming, etc... when I asked her to brush her teeth and to put her dolls away. I tried to grab her and put her on the bed (ah, the only downfall of the high sleeper) as she refused to get on there but she ducked down trying to hit me and I grabbed her hair instead of her arm. And then as well as being annoyed you have guilt on top of that. Today was one day I was pleased to get her off to school!!

So that's it really, a bit of a vent, a bit of news, I will check in later tonight and let you all know how everything went. Sorry it's long again. Bye xx

fallen_angel_69

blue monkey
hope you get on ok at hospital later let us know how you get on
as regards to stop him taking food out of cupboards i ended putting lock on kitchen door this works great if you actually remember to lock it i must confess there are times when i don't usually when i'm tired but this seems to stop dd2 eating us out of house and home she is overweight from sneaking food but she doesnt seem to understand why she struggles to get jogging bottoms to fit her

Savvy_Sue

Magnetic locks: keep the magnet in your pocket or too high for them to reach, they are quite tricky to fit sometimes and can be fiddly to get the magnet in the right place, but no chance of 'forgetting' to lock them! Plus they are nigh-on impossible to open without the 'right' magnet, a 'toy' magnet will not be strong enough. (Can you tell we locked our magnets in the cupboard one day? :rotfl:)

NoahsPennilessMummy

Trubster......my son goes to Ryegate too......apparently the social work dept at Ryegate can help getting the disabled buggies....i was told this after i bought one myself......ring them and ask if they can give you info.

blue_monkey_2

Evening everyone, thanks for the info on the magnetic locks, not worth it in this house but I will certainly bear that in mind for when we move.... when!! I think we need something, mind you I do usually keep the cupboards empty - I have hit a bit of a blip at the moment but next week I am starting afresh and clearing the carp out of the cupboard, this week with PMT is always a bad one for me but never mind, the cupbaords will be empty soon. I like to keep something for them, I guess I shall have to start hiding it - or putting it on top of the fridge - we have one that is 7ft tall - but he cannot (yet) get up there!!

So, today. We was in with the doctor for an hour and it is hot in that hospital. It was the longest hour ever, however my son was on true form. Doctor tried to measure his head and got a swift kick (or five) to the legs and chest, it ended with me holding him down while he was kicking out and he was literally boucing off the walls in the room by the time the hour was over. I expected them to be used to this kind of behaviour but they seemed amazed that he was 'like that' all the time. He then went on to tell the coloured doctor that she had 'a big nose and looked like a chicken'. I was mortified!! I apologised but everyone else was was laughing including the doctor while I sat there gobsmacked that he would come out with this saying 'they do say never to work with kids or animals'. OMG. There was lots of questions asked - lots of questions!! And she has diagnosed him today. Because he is under 7 they have diagnosed him with ODD (sums it up) or Oppositional Definant Disorder http://en.wikipedia.org/wiki/Oppositional_defiant_disorder They are going to speak to CAMHS and he is being reffered to their care for this (i explained he was refused care by CAMHS but it if different if the hospital refer the children), they are going to try and manage him with behaviour therapy and if this does not work when he is 7 he will be referred back to the ADHD clinic and will be put on medication (the very last resort but he will need it for school - a bit of a worry if I am honest but that is 3 years away). However, he has Hyperactivity and she has witnessed many AS traits but he needs more specialist advice from a psycologist/pysciatrist to find out exactly which AS condition he has or if it is one of many. So the start of a long road is ahead but it is nice to be on the road with one diagnosis and it gives me somewhere to start.

They have told me that they are writing to Social Services to contact me with help (also about getting a break from him as this will benefit the whole family - but I feel a bit weird handing him over to someone else tbh, I don't know if I am ready for this), also they are going to contact the school and give them advice on how they should treat him and his condition. It kind of feels pretty weird because he has been so 'naughty' for such a long time, it just feels like a kind of closure is underway really and that finally someone understands what life has been like for us. I also explained the housing situation because she had asked a question about sleeping and we got onto that subject and she told me that she is not happy that a hostel or temporary accomodation is being considered for him and that it needs to be sorted ASAP for his [Ryans] sake. I am not sure what I do about that as it is something beyond my control but I will mention it to the council when she comes around on Monday I guess, I can't do a lot else I suppose other than give the council the doctors details so they can discuss it.

So it has been a very tiring day but it feels nice to know that we are going to get the support he needs and this was all I was after at the end of the day.

blue_monkey_2

fallen_angel_69 wrote: »

blue monkey
hope you get on ok at hospital later let us know how you get on
as regards to stop him taking food out of cupboards i ended putting lock on kitchen door this works great if you actually remember to lock it i must confess there are times when i don't usually when i'm tired but this seems to stop dd2 eating us out of house and home she is overweight from sneaking food but she doesnt seem to understand why she struggles to get jogging bottoms to fit her

Ah fallen angel, it is heartbreaking when they do not understand isn't it. I have to confess he runs off more than he is eating so until now just turned a blind eye to it but when I read your message I guess I am not doing him much good by letting him carry on. I don't know if you have seen but Next now do a 'plus' size in clothing now and for some reason it is cheaper than the normal sized clothes. I hope you did not mind me mentioning but it might be worth a look. I bought some in the sale by mistake but I was totally unaware they were in the catalogue. http://www.next.co.uk/shopping/children/girls3-16years/1 they have a 'plus fit' logo on the items that are plus fit. Hth x

Something esle though, changing the subject. have any of your children got birthmarks. When Ryan was a baby I thought he had a bruise and it turned to be a cafe au lait mark, we came home and looked at it on the internet and it said that it can be a sign of other problems later on. The mark has not faded and it has grown with him. have any of your children got birthmarks like this at all, it looks like a patch of darker skin on his thigh, that's all.

blue_monkey_2

Me again, where is everyone, have a scared you off????

I have another link: http://www.psychnet-uk.com/dsm_iv/oppositional_defient_disorder.htm

And I have ordered this book: http://www.amazon.co.uk/exec/obidos/ASIN/0878339639/psychnetuk As it has received some good reviews.

Why is it that a lot of the places offering 'support' want you to pay for it? Dore wanted £70+ a month for their programme and there is another one I was directed to: http://www.dyscovery.co.uk/index.pl# and they want £75 fee for a medical questionnaire. I guess people will pay when trying to seek another opinion.