Anyone got a plan?

Thanks..he's had a terrible night..breathing still ok but a horrendous temp and very lethargic.

I don't think he slept more than a couple of hours and I was up most of the night trying to calm him. He keeps hitting himself as the spots are everywhere now and very sore/itchy...if he's not on the mend by tomorrow I will take him back to the Doc's monday morning. Poor kid 

We've had no hossie for 4 months and I know what you mean by the miracle thing...usually we are in every 4 weeks and if we are lucky over the summer it can lengthen to every 9 weeks at best..so I am hopeful we may have a better winter this year. O in particular gets very frightened when he's ill, he worries I'll not come in the ambulance etc..I always go but it scares him..the unpredictabiliy of his health is hard for him to deal with.

Mind you I struggle with it myself! So why I expect a 5yr old to do much better is beyond me .

Keeping my fingers crossed for a better nights sleep.

Oatie

xx

Hi oatie , my twins are prone to viral pneumonia as well ..although i must admit they have been good for about a year now so fingers crossed ...no hospital stays for 12 months its a miracle :) hopefully the wee one wont take it this time .

My little chap (the one we suspect has asd) has caught it and it's proving to be helping in so far as we can tell the other kids he doesn't want to play.

Funny he almost seems a little relieved but that maybe because he has it quite badly and it's really knocking him for six. He's coping really well but I have to keep a close eye on it as both boys have severe and rare respiratory problems..chicken pox can potentially cause viral pneumonia..and as he is prone to at least one bout of this each winter we have to be mindful of signs of respiratory distress.

So far no spots on S his brother but it's curtailing activities somewhat..and in a way it's a bit of a relief to have some respite for O. I really need to work on this better as I can see he struggles to make sense of his feelings regarding social interactions. I wish O had his own special little friend who he could relate better to and it would save him having to feel he needed to compete against his brother to be popular.

I don't worry anywhere near as much about his twin..he just takes it in his stride but because he isn't as academic as O he does relish the fact that he is better at making friends and can be a bit smug about it sometimes..this causes friction between them.

It will be interesting to see how your non asd child gets on at school...sadly S has distanced himself more from O since they started, although when O is in dire straits S will always defend him and say 'oh he's just a bit tired today'. They love each other deeply and S just accepts that O needs his time alone..if anyone asks why O has gone off he says 'ah he just needs some quiet time now..he's fine'.

I do think a diagnosis will help us all be able to speak more clearly to each other about O, and why he is who he is. We are holding back a bit at present incase we are wrong and give the family duff information. It will be a relief to know and be able to explain to others and his brother what we are dealing with.

CAMHS are coming next Tuesday, and that should be the start of what I am sure will be a lengthy process to some answers.

Oatie

x

Hi oatie , we have so much in common with our twin boys .. i'm just glad that although the twins are just 4 the non asd is so understanding when it comes to play dates (they just dont exist ) . My 3 younger boys including the asd twin all enjoy playing out the back with in the garden with their friends but when it becomes too much for him he comes in to play on the pc or listen to his music earphones ... this is working for the moment but may not next week .. my non asd is lucky as he has a great friendship with his older brother too and will easily join in with all his friends the way that asd cant ..it is a concern for me that my non asd wont be allowed to become indepenant of his twin but i have asked that when they begin school next week that they are seperated in class which will be a big stress for asd but it has to be done as i dont know what the future holds whether he will be able to remain at mainstream or not .. its great to hear everyone goes the same things xxx

I completely agree WB but how do I stop my boy from feeling he is being punished if I send his friends home..I do it nicely and have an alternative activity ready but he gets so upset that the play stops..even if he has just melted down over it.

We got home from dancing this morning and I was having to hang on to his coat to stop him going round to the neighbours to get his friend..in the end after half an hour of 'can I go now' I relented and both boys have been gone for 11/2 hours now! 

It's not like we don't share the burden with each other..the other kids only live 3 doors away and they all just flit between the 2 houses..so they'll be here or outside in the green or at the neighbours house, depending on how they are feeling.

I am feeling twitchy now..I did offer to do a home movies session but they all wanted to go to their friends today..hmmm better check up on them in a moment.

Yes JD O gets really cross at games..either he wants to change the game or gets annoyed if he can't do it 'perfectly'. Wrestling is the 'in thing' and it just winds them all up. I go and stop it frequently but I can't watch them constantly. Yes dog lovers here too and yes O is very gentle with the dogs and although not hugely interested he does understand to be kind to the dogs better than he seems to with humans or (NC's non canines).

Ah well I will keep trying better check on the troops.

Hugs to all..thanks WB for the tips as always.

Oatie

xxx

Hi Oatie,

Thank you for your reply. I'm not surprised you feel you're on pins the whole time it sounds like you have a lot of children round your house a lot of the time, I know this would add greatly to my stress levels so maybe you should tell them to b*ugg*r off some of the time, but I know what it's like at the same time you want your kids to have friends and fun. Where are these other kids parents, can they not come along and help out sometimes?

What is your boy like with games? Does he get stressed out? Whats he like with losing at games? This is something that sets my lad off.

Also I take it from the cute puppy picture you're a dog lover as am I. Do you have a dog and if so what is your son like with him? We have a dog and no matter how much my son kicks off and shouts and screams and hates us he is always kindness itself to the dog. Is this common with AS people do you know?

Sorry for the twenty questions it's just so nice to have a chat with someone who knows. Thanks.

JD18

Thanks it means a lot not to be alone. I am trying to find a balance so I can remove O from stressful situations without looking like I am punishing him..but it's not working.

If I try to find something more interesting to do all the kids playing with his brother decided they want to join in and I end up being the unpaid creche leader..and O gets more stressed cause his space is being invaded.

I was almost relieved he bit someone today so I could have an excuse to extricate him from a boisterous play session in the garden. They were all 'wrestling' and I could see O getting more and more worked up...ten minutes quiet time and he was fine but exhausted.

I feel like I am on pins all the time..like your on high alert watching and waiting and I know some of the other kids are starting to use him as the scapegoat too...grrr..it's hard not to feel really wound up about it but I am sure me feeling this way won't help anyone.

I'll let you know if I come up with a better strategy..maybe I just need to tell the other kids to b*ugg*r off more often and let my other son  decide whether he wants to go with them and play elsewhere. I feel like we have people camped on our doorstep at the moment. I would be easier if O could work out for himself when he needs to walk away..but he's still a bit young for that yet.

Good luck with the party..try and limit numbers and see if you can factor in some quiet games. We are having a party at a gym next month and they have organised some really good activities. Much better than a pub soft play party...I am sure they spray something on the padded surfaces that makes all the kids 'wired' at those places.

Let me know if you hit on something useful and all the very best of luck.

Oatie

x

Hi Oatie,

I don't really have any advice for you sorry as I'm struggling a bit myself but just wanted to say hello and I can sympathise with you.

My son is 8 and has had a vague diagnosis of AS. It is his birthday in a couple of weeks and is wanting to have friends round after school for a bit of a party etc we did this last year and he seemed to be in tears most of the time and really stressed so I can appreciate what you say about your boy and his play with friends.

I don't know about you but find the constant tantrums exhausting and you have it worse with having twins all be it that one is easy going.

Any way we plod on. Thank you and best wishes

JD18

Thanks WB..great suggestions as ever.

You do know I now want the recipe for the dog biscuits though don't you!

MAny thanks

Oatie

x