NikkiSmith

Happy Birthday - I hope your DH has made you put your feet up and have a very relaxing day!

Oh goodie, I'm not the only one another year older today then! I got..... a card from my mum (once I had convinced her it really was my birthday today and not next week!) a phone call from DP at the Olympics to tell me how bad his day had been and "oh yeah happy birthday, gotta go...!" and my 3yr old telling me I am too old for birthdays and cakes with candles! I am sooooo looking forward to my birthday present to myself - this weekend in Greenwich, nice hotel, good company (might even have to get a cake with candles on principle!) and lots of retail therapy on Sunday. Not as many celebrations in this house as you though - just DP's birthday on the 9th, mine today and the mother-in-laws on Sunday. Nikki.

Snap - ds2 has no school on Wednesday or Thursday, yet I still have to drag the other two to theirs.... I am not looking forward to the "it's not fair" battle, especially as ds2 had two inset days last week!

Thank you all... Smiley you are a very wicked doing that to me but thank monkey for making me smile Roll on tomorrow and the celebrations can begin!

I have to admit that I was very much like that lady until just over a year ago; I had my middle son who was far worse than any of the other children with autism I had met and I felt that their parents had it so easy and how my life was harder... (don't shoot me for it, please!) Since my youngest was diagnosed and is high functioning and then my eldest, also high funtioning I have had my eyes opened, big time! The two of them have so many different struggles in daily life and none of the professionals seem to recognise their issues (especially not Social Services!) and my middle son is very happy in his own little bubble and as long as his routine is unchanged and nobody interferes in his life (or expects him to sleep!) he is very content. DS2 goes to a special school, gets weekly overnight respite, access to a fortnightly Mencap club and all sorts.......... DS1 & DS3 aren't acknowledged by Social Services, no respite even though DS3's sleep is a limited as DS2's and I have to fight to get them help in school/pre-school. My opinion has changed - I think they all forms of autism are as challenging as each other, just in varying ways. I don't ever tell people they have it easy; that's not for me to judge. Nikki.

I'm 5'11 balanced out with size 10 feet! (well, one part of me had to be a size 10......)

I have my youngest two still up and bouncing around....... I wouldn't mind them not sleeping, if they would at least chill out and be calm and quiet, but instead they are very bouncy and not showing any sign of tiredness (unlike me of course.) Hope you get to shut your eyes soon.

I haven't ever tried to lock my son in his room - it would never work, it would only wind him up and create more mayhem. He attends a CLD school, gets top whack for both parts of DLA, is quite a houdini and barely sleeps, but still I couldn't get my head around how locking him in his room or a safespace actually helped. I did ask the lovely lass at SafeSpaces if they were soundproofed as I knew that if I put my son in one he would scream for hours until he was totally exhausted..... I know I needed him to sleep, but not like that! We also tried the camera in his room trick, but he worked out what we were up to and managed to throw enough objects at it on the ceiling to destroy it My problem is that with 3 boys on the spectrum, bedtimes are always going to be complicated cos there's only one of me. Teachermum1 - do you know of a school that successfully uses one? I couldn't find one anywhere in Hampshire when I wanted to find out how they used them/made them work positively for the (autistic) kids. Nikki.

My son's ex OT was adamant that these were the solution to all my son's problems - which is why she is no longer involved with us! Every other professional involved with my 5yr old said it was not what he needed; he apparently needed to learn that bedtime = time in his room if not actually in his bed sleeping. Also I had this image of me trying to chuck him in it and leg it out and zip the door up quickly afterwards - not practical with a solidly built 5yr old nevermind an older child! We went to view one - the fact that the nearest one to me in Farnborough was in Southampton and was for an epileptic child (who understood why he went into it) and SafeSpaces themselves couldn't tell me where the nearest one in use with an autistic child was! (I asked on loads of websites and email lists and still haven't found someone.) It's worth ringing them and asking if there's one near you to go and see it in use though. They are very cleverly designed; ie. totally enclosed and once inside there's nothing they can hurt themselves on, but I was told you have to ensure the child doesn't take anything unsuitable into it! It's also completely scrubable - which is a plus in this house. The door closes by being zipped up and you can opt to only have the zipper bit on the outside, but if you have a sneaky child (like us!) they can indeed manage to undo it from inside so our OT wrote to SafeSpaces and asked what they recommended - somewhere in my great filing system I have a letter saying that if my son is a "houdini" then I should simply tie or lock the two parts of the zipper together and in case of emergencies all I need to do is keep a pair of scissors and a stanley knife easily accessible!! (I could put them on the flippin ceiling and my son would find a way of getting them!) I did ask the social worker whether I would get into trouble if I locked my son in his room at night (sarcastically, as that's what they wanted me to do in a �3500 SafeSpace!) and she said she would not recommend it and would probably have to come and investigate the situation if I did! I have since spoken to a Dad in Southampton who has two autistic boys and their OT organised a SafeSpace for one of them and he said they gave up with it in the end and it's sat dismantled in their garden. Apparently it didn't work with either child (one severely autistic and the other AS.) I still haven't found a way of keeping ds2 in his room at night - we do have bolts on all the other doors (and double key locks on the doors to the outside world!) in the house, I keep the unlocked areas totally clear and free from things he can hurt himself with or climb up on and I sleep guarding the keys. Good luck with the SafeSpaces option, sorry for totally slating them! Nikki. ps. sorry it's such a long reply!

Thank you all - I know I am not superwoman (hey, just think of all the things I could do if I was!!) I do get some help - ds2 goes for overnight respite one night a week and then to a Saturday club on alternate weekends, for which I am very grateful. And we are due to start getting 2 hours help each week night with "bedtime routines" via direct payments, fingers crossed. In my spare time I am writing a mini-essay to the local government ombudsman pleading for them to investigate our case! Didn't mean to hi-jack the thread though....... sorry!

Other families problems are far easier to deal with than my own though Smiley - as you know oh so well Lie-in - yes, I do try when other half is home, but cannot manage the boys alone so it's usually more aggo then it's worth and I have even more chaos to deal with afterwards. Nap - rarely as I'm usually too busy! I'm sure I'll crash & burn soon.....

My sleep revolves around 3 little darlings.......... which usually means that I get to crash out at 1am and be up and fully fuctioning again at 3.30/4am! This is not good when you really need 8 hours undisturbed sleep to feel human. Hey ho! (that's the nearest icon I could find to a zombie-sleep deprived looking one!)

You can find more info about Direct Payments here: Direct Payments! We have finally just got the go ahead for 10 hours a week help and the money is supposed to be hitting the bank account soon!! It has taken a long time to get it all going, they began the process over 2 years ago and for the time being we have been told we will only get the DPs for 2 months on a trial basis. We get �10.09 per hour and we are organising national insurance and public liability insurance etc. and employing our ds2's old keyworker from his respite care home to come and help us with the madness we call bedtime. They seem to work for people who can find someone who is prepared to stick at it and provide consistency for the child, but I have heard of several people having real problems finding the carers in the first place. Good luck with it all. Nikki.

Sorry for the sloooooow reply - we were all running around like mad things getting organised for the donkey derby & then the weather put a stop to the whole thing! Ooooooh! how did the ski trip go? No injuries I hope! We are decorating cakes at the meet-ups this week so we'd better do a special one just for you.... I promise not to try and stick enough candles on it though See you later.

Hi Sarah! Glad that you found your way here Hope you've got a great Wednesday planned, or are you ignoring it and hoping it will go away? See you again soon, Nikki.

..............................we go out for coffee and end up buying more sparklies that shimmer and shine than we know what to do with! I think it's contagious, all this sparklies-malarky; my youngest ds loves it when I've been out with Smiley!

It worked for me just now - and is actually quite interesting, even though my other half says he still wouldn't be keen on such a thing when he really could do with some help! Thanks for the link. Nikki.

My darling other half has apparently done whatever it is one does to my laptop and it hasn't self destructed yet.......... but if it did it's far more likely to be down to him rather than a Windows update!

Do I have to come?..............couldn't I just stay at home? Nikki.

We have been for private assessments too, in Surrey if that makes any difference. My partner was first and was the best �300 ever spent! That was a 75 minute appointment with a fab psychiatrist. My now 5yr old cost us the same - but he was so flippin obvious you really couldn't question it! 3yr old cost us more because he was younger and definitley higher functioning - �490 for 90 minutes with a child psychologist and a great 4 page report! Next week I am taking my 7yr old, who is really struggling at school and I've been told it will take 3 1/2 hours at a cost of �160 + VAT! It's never cheap, but worth it for the lack of a waiting list and such a detailed report of what the problems are. A copy of each child's report has been sent directly to the paediatrician and they've both got their NHS diagnosis too once they eventually got an appointment. Good luck, Nikki.

We have the sand timers in various times/colours from brightminds.co.uk - they aren't the cheapest ones, but they have put up with all sorts in this house and garden and are still going strong!

My son had THOMAS outreach and it really helped him, once he got used to the idea of someone coming into his house and encouraging him to join in with some fun stuff! He had a TOPs worker for months and it definitely helped him get him used to the idea of PECS cards and trying to communicate before he went to the nursery at a special school. It was also great because she would go into his pre-school and show them what she had been doing with him and encouraging them to do the same, so that we were all being consistent. I hope it helps your son as much, Nikki.

One of mine is.............possibly.............maybe............. if I'm lucky they'll tell me for definite before Thursday morning!! Oh the joys.

My HV has been pointing bewildered parents in my direction for a while now - she thinks I am a gem cos I now run the local NAS branch, so she gets all sorts of info chucked at her to pass on the parents she meets and all the other HV's she meets too. I think it's a brilliant thing to do - if your HV has as many autistic kids on her patch as mine does, then I bet she'll appreciate it. Nikki.

What it is to be a woman-in-demand huh! I have the JKP one: Social Skills Groups for Children and Adolescents with Asperger Syndrome (a step-by-step program) Looks like good reading...... I just keep running out of time, so I'll happily chuck it in your direction! That should keep you out of mischief for a while. Nikki.