Here some suggested organisations that offer expert advice on SN.
it's Friday, is there no fred??(35 Posts)
Devient, I really hope so!
Thank you everyone for kind wishes - It's very early days. Treatment next week, I think.
Great news Maria.
I also meant to thanks those for wishing me, yesterdays meeting is the turning point. Thanks.
Blimey lougle, that's a hard one . Sorry for everyone else with bad weeks too, especially the poorliness in the sign, badvoc and moose households.
2old, I have a friend whose dc had that op, so pm me if you want. And good luck next week to everyone who's been struggling with the usual stuff (back-to-school, house, professionals, education-wrangling etc).
We have good news re DLA renewal: 2 years at same rate [sigh of relief].
Lougle I have you all in my thoughts.
(((hugs))) for all those who has had bad weeks also or if you prefer.
Yes sorry to hear the sad news, esp lougle.
We've had reasonable week, DS settling back in to routine and happier in routine than he was out of it.
Had illuminating week - paid for private slt assessment and ds come out with much more positive scores than nhs gave us a few weeks ago and optimistic for long term.Turns out nhs slt based her opinion on a single 5 min subtest (full test would have taken 2-3 sessions). On nhs test ds scored more than 3 years behind (he's just 6), on private slt he scored only 18 months behind in some areas. I don't doubt the true picture is a combination of both but annoyed we were given such negative news without explaining how limited the testing was.
Also had OT report just before xmas on ds motor skills which found no real problems, they were slightly behind but aba to 'keep doing what they are doing', left no exercises or suggestions at all, said school report 'no problems except he can't hop' (so classic over anxious mum scenario). This week took ds to a free trial of a dance class and within minutes i had a list of 6 motor skills he could not do - really basic stuff like he cannot kneel down at all, cannot roll his head / cannot turn it left or right when asked etc.
Which is just more nhs money wasted - both slt and ot will have spent 3-4 hours coming to visit ds in school, writing report etc just to misinform us - turns out me watching him for 5 mins doing a dance warm up alongside peers is more insightful. Whole system is total bollocks.
lougle your news makes me feel my life is ok
Sorry to all others who are having a crap new year (too many to mention individually)
Life here trundles on. On the upside have been passed proficient by GOSH to administer DD's weekly infusions at home (actually my tutor was lovely)
DS seen by orthopaedic consultant and has suggested a selective dorsal rhyrostomy?? due to his svere stiffness
Have a peaceful weekend my friends
Oh dear, sorry to hear all the sad news this week - not a great start to the year so hope things improve. Glad there's still some good news though.
Mixed bag here really. LA agreed to name the specialist independent school so we can start transition soon . It will be residential which will be a bit difficult to start with but we took ds for a visit today and he was very positive so that's a good start.
On the negative side I tripped and fell down a high kerb today and fell heavily onto my wrist and knee so have bruises and grazes all round .
Still waiting to hear from old school about the exclusion disciplinary hearing . They are meant to send all paperwork and witness statements 5 days before the meeting which has to be held within the next 6 days but have not contacted us at all yet .
Congratulations, commiserations, jubilations...I think that covers you all
Well, our week has been everything that would be expected for the first week back at school. I'm sure it's easy enough to fill in the blanks. I must rescue a bottle from upstairs before the kids go to bed.
and hugs to a few people here, I think. Lots of poorliness and upset
Too many 'nows' in that post.
Thanks Ellen and Badvoc.
He's not too bad-ish this evening after a few hours of lying on the sofa. Managed to muster strength to play on the Wii, but only if it was a sitting down game.
We're supposed to be having a family day out for dd's 4th birthday this weekend, but not sure ds1 is up to it and he will be devastated if he misses out. We were planning the butterfly farm (lovely and warm ) followed by a cafe that does gf lunches and then Stratford's Mad Museum, mainly because we thought ds1 would enjoy it. Now desperately trying to think of an alternative that dd will love, but doesn't involve as much walking now.
Also hoping the fact that it's going to snow on dd's birthday will mean she doesn't miss not having a massive all-class and thensome party like all her nursery friends.
Yeah...still feel very odd (no change there I hear you cry!)
Might go back next week to see if they can give me some better pain meds.
Badvoc, sorry to hear you're having odd neuro issues as well. Hope they manage to get to the bottom of it quickly.
Ellen, the first half of my week was great and I am in a surprisingly good mood considering. I will gladly join you in a glass of virtual cava, not least of all because I'm back on the healthy eating wagon and can't have anything in real life. <raises glass to Ellen's freedom>
Crossed with moose and Badvoc. Not a great start to 2013.
Well, I was going to start a virtual Cava party, but I don't think anyone is in the mood. Not a good week for anyone, then?
Glad yours was uneventful, movingon.
Sorry to hear about your niece, Lougle.
Sign, hope your DH isn't too down.
Saw your thread, hazeyjane. You horrible woman, making the nice SALT lady cry.
Sally, I quite like the 'naughty little sods,' they certainly stick in your memory...
Hope you all have a good weekend. Is everyone really tired? My body clock is still in holiday mode, this week has been exhausting.
Glad to be finally divorced, for all your company and support over the last 16 months, so glad I found you all beforehand.
Lougle. So sorry. What dreadful news. Thinking if you all.
Star. Our builder was farm but not sure if he travels. Whereabouts are you? (Pm me)
Not a Great week here...I was rushed into hospital on weds. Am ok. Had tests/scans etc and still no idea. Neuro issues so...god knows
Dc back to school ok.
Conservatory roof leaking and needs replacing...£3.5k. Also needs a radiator in there too. Sigh.
Hope next week is better for all x
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. <sigh>
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.
Hazeyjane. Just read it all. ((Huge hugs)) for you my friend.
Sign I love him dearly, but sometimes you look at him and think I don't think that was ASD...... School reported all week that he'd been full of beans. Code for "naughty little sod and I need eyes in the back of my head to look after your child Mrs Bear"
Sorry to hear about your niece, Lougle.
The highlight/lowlight of our week was me reducing our SALT to tears...details here!
Oh and our lovely hydrotherapy session today, which was heaven.
sally have visions of you wrapped in loo roll like a mummy
zzz dh is the 'un coolest' bloke i know, so loving the thought that scooter wld give street cred, LoL
Lougle. Awful news. I am so sorry, no words just I hope she pulls through. x
Star - builders are definitely a word of mouth thing ime. Ours does travel but you are South London?? So not sure but pm me if you want some info.
Sign sorry about your DH.
Devient - glad that things are improving
Margot - ((hugs)). Never great when it gets too much.
All ok here. Bear cubs have had an uneventful week, though DS4 seems to have suddenly developed a naughty streak! My Poinsettia which is always a struggle to keep alive, has been ruthlessly pruned by DS4 there is now one bloom left. The huge orchid which my DM gave me at Xmas has had it's leaves ripped and stuffed down the loo. Oh he's been a busy boy! Lets not go there with the endless trail of Andrex!
lougle, so sorry to hear that
star hope you find your builders, dh has family in your area, so will ask if they know of anyone who is good, and reasonable...
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