blackmagic Posted May 10, 2020 Report Share Posted May 10, 2020 Suzeanna, he is not autistic he has 'disregulatary syndrome'; he is vey intelligent and also very good manipulator. H e expects everything to be under his control and cannot cope when his is not 'in charge'. Even if he gives in and does what he is told he will do it his way, or in his own time. His behaviour has improved since I have been here as he has found out I will not accept his manipulation to get his own way. If i say it is not happening unless he does something he knows I mean it. His parents have also tightened up a bit now that they see his reaction to me telling him to do or not do something. My son says it is good having granny to back us up, as he realise it is not just them. It is little things like kneeling on the chair instead of sitting, looking at his plate and deciding he doesn't like one thing on it . Not using his knife.,playing the fool instead of eating his dinner. He has no concentration for anything except computer games. Wants to do things but gives up after5 minutes. When things don't go his way he'll storm out of the room banging the door, stamp his way up the stairs, bang his bedroom door once , sometimes twice Five minutes later he will appear as if nothing has happened. That has stopped recently although he still storms out stamping his way up the stairs as we showed him how frightened Cleo was when he did it and he adores her. She would hide in a corner and tremble. When told to do something by his dad he will look at me to see if I am watching , and if I am, he will do it. He takes it from me but not from his parents, particularly his mother. If he can't do something immediately he considers he is a failure and stupid. No amount of encouragement makes any difference. But he is the most willing child to help you do things, or fetch things, or let Cleo out into the garden etc. They are getting help from an occupational therapist to find ways for him to cope with his feelings. His brain is always away ahead of him. When he sits down to his lunch he wants to know what is for dinner At night he wants know what they are going to do tomorrow. He needs a fixed routine. Link to comment Share on other sites More sharing options...
blackmagic Posted May 10, 2020 Report Share Posted May 10, 2020 Yantan, it is a big sensory overload when they are not used to things. My friend's rescue dog would not go out into the garden alone for ages as she had been left shut outside for hours. Cleo came into rescue aged 2 along with 9, 11 week old pups. She is still frightened by banging doors or raised voices, even on the tv. The first time I used a clicker she bolted out of the room with her tail tucked under her belly. Some fears never go away. Link to comment Share on other sites More sharing options...
suzeanna Posted May 10, 2020 Report Share Posted May 10, 2020 Quote I've never heard of that, Blackmagic. Is it something he will grow out of? Jamie is very bright, he could do things online when he was four that his mum couldn't and he can read and write better than his sister. His behaviour is difficult though..he's now scared of flying things and refuses to go out of the house! When they used to go shopping he wouldn't go through the automatic opening doors if they were already opening for someone else. His mum finds him very hard to cope with. Our little cocker Candy had obviously been illtreated before we got her, if you picked up anything that looked like a stick, she hit the floor and shook. She still howls in her sleep sometimes, after three happy (I hope!) years with us. Link to comment Share on other sites More sharing options...
owl Posted May 10, 2020 Report Share Posted May 10, 2020 After all these years, Wispa is still nervous of anything remotely resembling a pound kennel. Small sheds, loo cubicles, no way. Link to comment Share on other sites More sharing options...
Yantan Posted May 10, 2020 Report Share Posted May 10, 2020 1 hour ago, Jazz said: bugger. foster will have to stay here for how long? good job hes so good can rescues travel to get dogs? your dogs come from the pound did you say? That was allowed. just need dogs to be picked up from homes. if a rescue is classed as work, and they can go back to work, would they be allowed? Ask the rescue you foster for. They will all have their own plans and naturally some will vary in small ways right up radically different. No mine didn't come from the pound. Bona fide rescues are allowed to move animals for welfare issues but have to all the necessary paperwork from DEFRA. I am sure the PM's announcement tonight wil change things though. Am I the only one who thought it was rather ambiguous? Link to comment Share on other sites More sharing options...
blackmagic Posted May 10, 2020 Report Share Posted May 10, 2020 43 minutes ago, suzeanna said: I've never heard of that, Blackmagic. Is it something he will grow out of? Jamie is very bright, he could do things online when he was four that his mum couldn't and he can read and write better than his sister. His behaviour is difficult though..he's now scared of flying things and refuses to go out of the house! When they used to go shopping he wouldn't go through the automatic opening doors if they were already opening for someone else. His mum finds him very hard to cope with. Our little cocker Candy had obviously been illtreated before we got her, if you picked up anything that looked like a stick, she hit the floor and shook. She still howls in her sleep sometimes, after three happy (I hope!) years with us. No,, he won't grow out of it but they hope to give him coping strategies to use. He knows 'his brain works too fast all the time'. While he os doing one thing his brain is looking for the next thing todo. nOne thing recommended is chewing. he does chew his clothes so h has chew buddies to chew instead https://www.amazon.co.uk/Chewbuddy-CBA81RAB-Pack-of-2/dp/B00KLDO5PW They have a chart for what he does when throughout each day- This works for a short time but then he starts to react when he doesn't want to do something that is on the chart for that time, although he agreed to it at the time. If he doesn't like something happening he says 'no,no'. I replied 'yes, yes' and he stared at me speechless! He had no answer for that, which is unusual as he always has an answer for everything. Unfortunately, his mother gets tired of the battles and sometimes gives up, so he wins again. Link to comment Share on other sites More sharing options...
Yantan Posted May 11, 2020 Report Share Posted May 11, 2020 Good for you Blackmagic. Consistency is key - just like with dogs. It is understable that your D-in-L gives in at times because it must be very difficult for them all living with your grandsons condition. I think a grandparent or other family member who won't put up with undesirable behaviour often wields more authority. When my brother's kids were young (they are grown ups now) he used to threaten them with me when they were playing up. "Do I have to get auntie Marion round" and they'd shriek "no" and do as asked. They weren't frightened off me but they knew I wouldn't stand for nonsense. They used to be here frequently and we had some lovely times. I taught them how to use my computer, they loved to make dog biscuits for George and go for a walk with us and they were allowed to make a bit of a mess (their mother is a clean freak) as long as they cleared up at the end. Link to comment Share on other sites More sharing options...
suzeanna Posted May 11, 2020 Report Share Posted May 11, 2020 Had my scan this morning, then saw the oncologist. News was rather worse than I expected, though saying that a bit of me was thinking it could be. I have soft lumps all up the side of my neck to under my ear, and they are a spread of the cancer. This means that instead of the radiotherapy targeting the hard lump, which is very near the surface of the skin, so the rays won't need to go deeply, they will have to do the other lumps too which are deeper. He explained that however careful they are there will be some overspill of the rays, so I may find it affects my windpipe and gullet. I may well have trouble swallowing, and my voice will change. This shouldn't be permanent and should improve after a while after treatment. Also sore skin, swelling and extreme tiredness. I was just contemplating this little lot when he asked had anyone discussed my aorta? Erm..no...should they have? Apparently I have dilation of the aortic arch, which is gradually become more pronounced on every scan and he was amazed that I haven't been referred to a vascular specialist, so he's doing that. Oh goody. Oh..forgot to mention our morning panic. Got all sorted, got in the car, Philip turned the key and zilch! Flat battery. He hurtled next door, knocked and got the poor neighbour out of the loo, and her son out of bed so they could bring their car round and jump start ours! Thankfully the traffic was light in Sheffield so I got there in time. I have the treatment tomorrow and every day this week and next Monday. As you can imagine I'm rather cheesed off. He did make it clear that it's palliative treatment, it's not going to fix things. There was some good news, the scan I had at Chesterfield the other week shows everything else is responding to the Anastrazole, he's baffled as to why this part isn't. He does make me smile though, social distancing isn't in his remit, arm straight round my shoulders when I went into his room. He did put gloves on to prod the lumps though. Link to comment Share on other sites More sharing options...
griff Posted May 11, 2020 Report Share Posted May 11, 2020 Suzeanna, I wish you the very very best for tomorrow and the coming weeks xx Marion, is it Ruby's appointment at the hospital today too? Got everything crossed for her too Link to comment Share on other sites More sharing options...
Jazz Posted May 11, 2020 Author Report Share Posted May 11, 2020 im here for you any time and everyone of you xxxx Link to comment Share on other sites More sharing options...
owl Posted May 11, 2020 Report Share Posted May 11, 2020 Suzeanna, "cheesed off" is quite an understatement for something like that! We will all be thinking of you. Jazz, how is the breathing? Link to comment Share on other sites More sharing options...
Jazz Posted May 11, 2020 Author Report Share Posted May 11, 2020 just had a text. I have cataracts, ring to talk about an op. im no 12 in the queue Link to comment Share on other sites More sharing options...
Jazz Posted May 11, 2020 Author Report Share Posted May 11, 2020 lungs hurt, feel clogged up. no energy to do anything. wonder if ill get a food parcel this week 1 Link to comment Share on other sites More sharing options...
eve Posted May 11, 2020 Report Share Posted May 11, 2020 Tough day for a few of you today. Love and healing thoughts go out to you all xx Link to comment Share on other sites More sharing options...
Jazz Posted May 11, 2020 Author Report Share Posted May 11, 2020 xxxxxxxxxxxxxxx Link to comment Share on other sites More sharing options...
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