Jump to content

Deedee

Members
  • Content Count

    286
  • Joined

  • Last visited

1 Follower

About Deedee

  • Rank
    Ben Nevis
  • Birthday 06/23/1966

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Gender
    Female
  1. Well we are off to hospital on Sunday for the op first thing on Monday morning M is really struggling to cope at the moment,we did manage to get the school swap sorted before they broke up and the new base he is in has so far exceeded my expectations When he goes back he's in a class of 4 with 3 adults! Will fill in all the info on this when I get back... R is not coping well with the thought of needles and major surgery so its to be expected that M is stressed,and the fact he's never been away from me is not helping.I plan to take plenty of Vodka and chocolate in my case
  2. Aw well done Sir Ben Sounds like he's had a wonderful experience wish we had something like that here M would just love it!!
  3. Thanks Smiley <'> He is used to social stories but he's the same he doesn't retain info for very long so I have to use them to constantly remind him usually! Even though he's 9 we still struggle to retain things like the days of the week! *mind you I never know what day it is half the time...* SServices have agreed to fund an extra pair of hands from 10-2 each day for the first 14 days he's home from hospital which will be a huge help,as you say another pair of hands and eyes...but we were hoping our boy who already does our respite could do it and he's said Saturday he's at his other job during the week and won't be able to get time off so it'll be a challenge finding someone else just for the fortnight who M will take to... It'll be an ongoing problem too as he is having growth rods put in rather than the final op so they'll need expanding every 4 months or so It's going to be fun!!!! Hospital is in Middlesex too and we're in Surrey so its a bit of a nightmare all round...we always knew he'd need rods put in but were only expecting the one big op,but as his curve has got so bad they need to use rods to keep him straight now until the big op rather than a body brace. All this is going on while M is changing school too!!!! I wasn't meant to lead a quiet life lol Thanks for your help its much appreciated Dee XX
  4. Deedee

    Laptops

    There are loads of free typing programmes online you can download to encourage him..my eldest loved The Typing of the Dead,it's quite a gross typing game with Zombies etc but he's the fastest typist I've ever seen now!
  5. Thanks Smiley thats a huge help The bit that worries me is telling him I'll be away..I know he'll kick off,it's not that he cares about me, it'll just make him mad as it'll disrupt his routine I'll split it into manageable chunks for him and maybe do the 'going away' part before we go,then get dad to do the DS2 is sore bit while we're gone,then just before we come home a coming home one and redo the sore one??? Does that sound about right..can you tell I'm clueless I admit to being plain terrified ( not just cos of the op he's having) but I just know M will remember for all of about a day if we're lucky that he's not to hit him..
  6. <'> J's mum <'> I've watched you fighting for your boy every step of the way don't feel bad you are a wonderful,caring and very special mum. <'> I'm so sorry to hear the agencys are still giving you such a hard time with the school placement (I know how that feels...) Hope things start to look brighter for you very soon Dee XX
  7. Now I know you lot are brilliant for suggesting stuff and I have looked everywhere I usually use but I just CAN'T seem to find what I need so HELP!!! DS2 has been given a date in August for a major spinal op I'm absolutely terrified,but thats another story... What I need is a social story or something to explain to M what is going to be happening..I am going with DS2 as DH 'cant do' hospitals so DH is going to learn the hard way that staying home is not the easy option either! I need to explain that I am not going to be home at all (hospital is miles away) for 2 weeks,and neither is DS2 and that when he comes home,M is NOT to beat the living daylights out of DS2 as he currently does daily now...recovery is going to be challenging..with ops every 4 months or so afterwards. Any suggestions please peeps *short of just locking myself away with a large bottle of vodka til its all over* Thankyou XX
  8. ooh this is a hard one to answer.I've had so many bad experiences at the shops we actually stopped taking M out for a while because it caused him so much distress and us so many rows!! More recently he has been coping better with shops in short bursts so we are gradually venturing out more. I try to distinguish what people are moaning about before I decide wether to reply...If it is behaviour that is purely caused by his Autism etc i.e complete sensory overload leading to a screaming helpless little boy or undressing to his pants, (he hates clothes) I explain if asked/commented to by others.We usually have to abandon any plans for shopping if this happens! If it is behaviour which he does understand is inappropriate I do try to explain to him what he's doing is wrong and why,and if had caused problems with other people I would try to apologise/explain and hope they'd be understanding..*yeah right* !!!! I try not to use his ASD as an excuse but I think its hard sometimes to know until much later in the day...or week even with M what caused the problem,leading to the behaviour.
  9. Well since we went to panel and they agreed to move M,the papers have been sent to 3 schools...visited them all and they're all perfect..BUT full. LEA is now sending this back to panel again...by the time we're sorted he'll be 30!!! We are now 6 years into our fight for specialist education and really thinking of going to the media now We have used every other means,IPSEA,MP's,Councillors but if there's no space what can we do??
  10. It's ok it's happy tears!!!! Panel have decided to up the provision in current school to full-time for the present starting after hols... BUT have also recommended that the 3 schools we are happy with are approached for placement ASAP To say I'm one happy is an understatement...I could have kissed our LEA rep We still have to get through the hurdle of 'no spaces' but at last I feel they are doing right by my boy I burst into tears when I read their decision its been a long hard fight to even get them to recognise my son's difficulties *6 looong years* but I want to say to others going through this please don't ever give up!!! Thanks to all the peeps that have kept me going and helped with advice on different schools.I still plan to lobby those in high places for more provision in our borough as there are so many other parents looking for the same sort of provision as us. Dee XX <'>
  11. Well,finally,at long last M's case goes before the review Panel today *please cross all your bits for us..again!* I spoke to the LEA lady and she said it's going before the Annual Review one and this means??? Is there a difference?? Is this the one which will decide on a change of school or not then??Anyone? Apparently they make a judgement as to what 'should' happen,then it has to go to a higher being on Friday to check they have made the right decision... and she tells me they can't tell me anything over the phone as other parents in the past have misconstrued what has been said soooooo we have to wait for a letter Bearing in mind last year our review was in June,there were no changes to be made and we finally got the letter in September...d'you think I should still phone Friday I'm off to CAMHS tomorrow and she was hoping for some news!
  12. Flora I won't show you my storecupboards... We have an awful problem here too,restricted diet at the best of times due to smell,texture,tastes,colours etc etc and a packaging change is my worst nightmare!!! I tend to keep a huge stock of the few things M will eat so I have spare boxes stashed in case they 'rebrand' something Then I resort to repackaging the new stuff into the old boxes/bags til they fall apart and hopefully by then he has found a replacement food.This doesn't happen very often though..and believe me I persevere every day trying to tempt him to try something new.
  13. Mcains oven chips are apparently ok *at present* as long as its the plain ones just with sunflower oil as they aren't 'bleached' first..Alphabites are too now they've been rebranded.
  14. Loved this book..laughed and cried my way through it in an evening.Sat there nodding my head thinking 'yep just like M did /does' I bought the DVD when it came out too.Highly recommend both especially for lending to family members who maybe just don't 'get it' yet...
  15. Just a quick update...the papers have now gone completely AWOL,lost in the internal post So to cover our butts I'm taking a copy of all I've got down there by hand tomorrow so we'll still hopefully go to panel next wednesday...she says all confidently..*whats the betting something else will go wrong* Meanwhile I've had a few of my other meetings to keep me busy (residents assoc etc) at which I just so happened,not deliberately of course to bump into a few of my local councillors who I know quite well.They sooooooo made a mistake asking how the boys were but have all been filled in as to whats going on and all are eager to help Might be of use that 3 of them are on the education committee...watch this space ooh and I collared my MP in Sainsbury's mid shop poor man!!!
×
×
  • Create New...