Lougle, so sorry about your niece.
Dev, am keeping everything crossed for your hopeful news this week.
Mixed week here. Started well with LEA Officer agreeing to start paperwork and approach the out of area independent school we want for ds. Doesn't mean they will let him go there, but it's looking a lot more hopeful than it was even a week ago.
Also had an awesome OT assessment with ds2. Awesome because it was an incredible OT, who really listened to ds and let him lead the session, then came up with a whole host of aids to help him, as well as arranging to go into school to assess classroom etc and tell them he needs specialist seating, setting up a proper school care-plan for him, sending specialist PE teacher into school to teach staff how to differentiate for his needs, referring him to the physical disabilities wing of the inclusion team and I forget what else, but she was bloody brilliant! I could have kissed the woman. Ds2 came out of there positively beaming, having finally been listened to, heard, believed and understood.
I did warn her that we are already public enemy no 1 with the school due to ds1 and she didn't bat an eyelid and said leave it to her. I knew the school weren't going to be impressed and sure enough, the next afternoon, as I collected ds2 the SENCo was there to tell me OT had already called and is going in next week. So not only an excellent OT and really on the ball, but efficient as well!
All went down here from there though.
First of all we discovered my elder dog is really poorly and going downhill rapidly. She is 13 and until very recently still behaved like a pup, but she's losing weight rapidly, lethargic etc. I always thought she'd be one of those dogs that lives till 16/17, getting fatter and smellier as she goes - seems I was wrong.
Then ds1 took a turn for the worst. He has suddenly gone from being a confirmed insomniac, taking hours to get to sleep, having a couple of hours of light sleep then waking us all up really early, to conking out, sleeping like the dead and being unable to get up, yet being totally exhausted all the time. He looks like a ghost.
This morning he couldn't even walk to school he was so weak, but insisted he wanted to go. He attempted a meltdown when I told him I wanted him to stay home, but hadn't the energy to manage it. Had to go to assembly, as ds2 was star of the week, but ds1 didn't manage more than 10 minutes. He literally couldn't hold himself up in the chair. Another attempted meltdown when I tried to get him out during the first hymn, but bundled him into the hallway and took him home. Called GP, who happened to have an appointment free in an hour and took him straight there. Doc took one look, listened and sent us straight to the hospital for bloods. Cue another meltdown, as he didn't want to feel the pain, but can't stand the emla cream on his skin.
The only other symptom is that he keeps telling me the world has suddenly slipped sideways. He says it's as if the ground suddenly tilts in front of him and he feels like he's falling. He also seems to be missing portions of conversations and in some cases even missing every word someone says to him. His LSA told him today before we left school that he wasn't missing the thing he really wanted to be in for today, because it's been moved to Monday. He was standing there looking towards her, apparently listening, but denies all knowledge of the conversation. He did the same to me at lunch, we were all chatting, talking about computer games - so his specialist subject and not one he's likely to lose interest in and all of a sudden he said "What?" I asked him what he meant and he said "What are you talking about?" I said, I've just explained it all and he said, "I only heard that bit". On questioning, he'd caught the last two-three words and none of the rest and had no clue what I was talking about. The whole time he was sitting there looking at me for all the world as if he was giving me his full attention. I know what it looks like when he 'zones' and it's not like that at all.
It feels a bit like groundhog day, as we've been through this before, GP wanted him checked for epilepsy/absences, but his paed pretty much dismissed the idea immediately saying it couldn't be seizure-like activity, but was ASD zone outs due to stress.
GP said it could be stress, but he wants to eliminate every other possible cause before he makes that call.
Meantime, neither Paed or GP would refer to CAMHS for the tics, reflux and enuresis he's had as a result of last term - as it's school related stress so Paed insists it's EP's responsibility. So we are going back around that loop, trying to get him some proper psych support before secondary transition properly kicks in.
.... aaaand again with the mega posting sorry folks.