NikkiSmith

Anne, We are currently working on get a Disabled Facilities Grant for a loft conversion (to get two bedrooms and a bathroom up their for two autistic boys and then turn their current bedroom into a padded sensory room.) They can pay up to �25,000 for alterations with a DFG, but it takes time! We've got the SS OT involved and she has dragged the surveyor out to see if it's possible - which it is, but it's been on hold as our social worker is off on long term sick leave and they have only just allocated us a new, freshly qualified one.... so I'm not holding my breath for progress! Not too sure about any more info, I have asked on here before, as I haven't actually met anyone who has successfully got a DFG and had work done, so it's clearly not an easy challenge. I'm guessing they would probably help with the outside shed idea as that would be far cheaper for them! Good luck! Nikki.

Oh Smiley <'> <'> <'> How do you mange to put such a flippin' brave face on all the time? I don't know what else to say, but I am here if there's anything I can do to help. Nikki. will go e-mail you too.

Save Our Sanity is a group of parents from the Hart & Rushmoor areas who didn't want to feel isolated for the Summer holidays, so we got together and organised some Summer holiday meet-ups. These were so successful that we would like to continue organising meet-ups, but we need to know what everybody in the area would like. If you could go to our website SOS and look at the "What next?" page and tell us what you and your family would like to attend and we will do our best to make it happen! If anyone else has any other suggestions, please do let me know. Thanks, Nikki.

This whole thread just makes me even more determined to bring my boys to see you! I must get DP to stay in the country long enough and I WILL succeed...although I am wondering if I had better bring my 6yr old (NT) too - just in case! Think I'll stick to flying there and back in one day though, I am not staying in a B&B overnight with three boys and I'm not even considering the caravan option! Nikki.

No helpful advice either, sorry, but I do know exactly what you mean! Iain doesn't even really acknowledge me as "Mummy" - yet if he lashes out it will be me he targets, never Dad. I can be hit, kicked, punched and bitten until he's finished, if I'm not here he seems to store it up! As you say, we are the ones who are always there. I can do hugs though... <'> <'> Nikki.

My 5yr old wears them all the time! They are fab is if he's having a huge meltdown - people tend to leave him alone rather than thinking they can magically calm him down. Also he has very limited language that's actually understandable and the t-shirts/sweatshirts help answer the puzzled faces of people who try to talk to him! He has various slogans, like: I'm not naughty, I'm autistic; Autism with attitude; I'm autistic, what's your problem. But I also love his ones which say "I (heart) being me" and "Hard to find, lucky to have!" Several of my friends have said that they don't like them as they are labelling the child, but I think I'd rather he was labelled as autistic and not just as a monster who's mother cannot control his off the wall behaviour! Never been brave enough to hand out the cards though. I hope your DS is happy to wear them and it helps you feel less stressed when out and about. Nikki.

I'm going to the Farnham one too. I was told yesterday that the places were being taken very quickly, but they had managed to negotiate another 60 places, that were going like hot cakes! I guess you need to book soon to get a place. Nikki

Have you tried contacting the peeps at www.sibs.org.uk - they may organise groups, or failing that they have the info on their site as to how to set up a group! Other than that, I haven't seen anything even remotely similar. It really is an area that lacks support. Nikki.

My 4.5yr old does this repeatedly and his room. He now has lino down, as the carpet didn't survive, his bed is an adult-sized little tikes car one (so plastic and easily steamed and scrubbed!) his walls gets washed and repainted frequently and his curtains go in the washing machine too. I highly recommend steam cleaning anything in his room that you can as it gets rid of it. Am definitely going to try the white vinegar thing too - the smell of that has got to be better! Anyone have any magical ways to get rid of the smell on his breath? he fights teeth cleaning at the best of times, he won't use mouthwash, suck mints, nothing! It's revolting, but he doesn't seem to understand that this is a truly gross thing to be doing! I hope the OT & SW do something to help! It's good that they have smelt the problem too. Good luck, Nikki.

We got one a couple of weeks ago and my 4 yr old loves it! He spends ages bouncing around in it and failing that, he zips the enclosure shut and lies in the middle of it watching the clouds go by without his brothers bothering him! I think it was worth every penny! Which wasn't as much I had thought it would be either. Nikki.

Both my ASD boys have what the paed called ligamentous laxity - floppy joints - their wrists and ankles are seriously flexible, which is causing my youngest to end up flat on his face every time he tries to run, as his feet just flop inwards! I was told it's fairly common in autistic kids. Nikki. (lovely pair of legs too! did they mind posing for the camera?)

Well done to him..... and not a single mention of a transformer! What a good way to start your week. Nikki.

My 4yr old was precribed this about 6 months ago, but it made him even harder to deal with! He was hyper and bouncing off the walls!! It seemed to have to opposite effect on him until the next day at school, where he would fall asleep in the middle of the playground! We gave up on it very rapidly, which was hard as this was our last resort having already tried Melatonin and Vallergan. I think one sniff of it would knock me out! but doesn't seem to work that easily on my boys! Is your son still taking it now? or have you found an alternative? Nikki.

Thanks for putting the website address up Smiley - I am still working on it in my spare time, so if anyone has any info that I've missed off please yell in my direction! I only have littlies, so looking at stuff for over 6's is new to me! I look forward to getting involved with the other new branches too - it's about time there was more support in Hampshire! Nikki.

Hev, The feelings of being ashamed & guilt-ridden will go - I felt hugely ashamed that I couldn't managed my 4yr old ds and that I had got to breaking point before SS would offer us any overnight respite. He now goes for regular (ish!) respite every Wednesday night. It gives me a chance to do "normal" family things and then get a better nights sleep (in theory, but not with ds3's awful night habits now!) whilst somebody else is up most of the night watching Teletubbies and building wooden train tracks! I now look at the positives; when ds2 comes home I am much more refreshed and able to deal with him and his behaviour. ds1 is more tolerant of him having had an evening of quality Mummy time and ds2 has had a fab time playing all night in a different room with a different adult persuading him that it's bed time! Good luck with it and I hope SS have somewhere suitable in mind. Nikki.

WOWSERS! I have just got ds2's DLA letter saying that as of June 2007 (that was the renewal date) he will still get the higher rate for personal care, but they've also awarded him the higher rate for mobility!!! I am totally amazed! I didn't think he should a chance, especially as he's not 5yrs yet and the paed wouldn't fill in the form as she doesn't get paid too! Oh well that's out of the way with ds2 until August 2010, just got to get on and claim for ds3. Good luck to everyone else going through the weird and wacky lottery known as claiming DLA. Nikki.

I have to be boring and say this place has helped me so much - everybody here knows so much more than any of the so called professionals around here! Also my health visitor; she is my rock and calls a spade a spade! I had to change GP surgeries to get her, but it was really worth it! She fights for me and my boys and without her ds2 wouldn't have even tried melatonin (previous HV thought melatonin was that in your skin!!) I wish I knew of a suitable way to thank her for all she does & I dread the day she dares to retire. Nikki.

Phew! You mean I'm not the only one who dreads the weekends?! Everyone I speak to tells me "it's ok, it'll soon be the weekend!" when I am struggling with little darlings on the school runs and I never got why they thought the weekends were actually any better. I am stuck at home with 3 boys who I daren't try to take out on my own as they all want to go in totally different directions and 2 have huge meltdowns when they can't! Or just fight the fact they are strapped into their double major buggy and I push two screaming nightmares along. I know that doesn't really help to cheer you up about it all though, so have a <'> and just think you have survived Saturday all ready so struggle through tomorrow and then you can repeat the whole saga in another 5 days time! Hope tomorrow is a better day for you. Nikki.

Blimey! I shall count ourselves as very lucky then!! It seems so wrong that where you live determines what help you get and not your actual needs! The OT came out again on Thursday and had actually tracked down a family with a SafeSpace in Southampton, so we are going to visit them to see it and how it works for their epileptic child (it's going to be a real outing as the SW is coming too as she's never seen one either!) And she called on Friday to say that she had the Grant Manager's permission to organise a surveyor to do a feasability study into how to adapt our loft. I am so totally amazed! Now just got to wait until May when the next appointment is booked for. Nikki.

No idea if it's the right sort of thing, but Rompa do a "bear hug" vest. Is that the kind of thing you mean? Nikki.

Thanks for the replies - so it's omega oils I'm after. He'll only eat baked beans (or a plain piece of bread for breakfast as I'm cruel and won't let him eat beans at 6am!) and having tried putting things in them before, he will now choose the tin he wants and watches me whilst I open it and put half in a bowl and then he carries it to the table - I am not even trusted to heat them up any more. So getting him to take the omega stuff is virtually impossible, it's proving a challenge to get the melatonin down his neck too but I am not taking that for him!! Hmmmm, I think I'll try a big Boots store and see if they can help this mad woman today. Thank you! Nikki.

ds3's paed suggested fish oils might help him but as he'll only be breastfed I have to take them and he'll get something via the milk! I have tried smuggling all sorts into his baked beans and he notices, nevermind fish oils! But I didn't think to question how much I should take and the lovely lady in the chemist thought I had lost the plot! So how do I work out what a sensible dose to take is? and will ds3 actually get a reasonable amount of this? Any other ideas are always welcome! TIA, Nikki.

Hmmmmmmmmmm......... Oh goodie! another set to go through! Thanks for the replies - I guess I'll give it a try and see what they say. Can't do any harm in trying can it? He's non-verbal (but I think he understands) and goes to SALT group for an hour once a week, he doesn't sleep well (paed has given him Melatonin to try) he can walk, but falls flat on his face if he tries to run! Is a super fast undresser (especially when you've just got him dressed and you are trying to get out the door!) and more that I am realising as I type this...... maybe not so normal. Oh and he's a clean freak and lives on baked beans! Thank you all! Now I just need to find the time and enthusiasm to do it. Nikki.

Ds2 is now 4.5 yrs and is just starting to try and say words (ie "hamitch" is orange juice & of course "barbarm bam" fire fireman sam!) he has always had his own language, but never anything anyone actually undetstood so was put under the non-verbal heading! Slowly we are making progress, so don't give up hope yet. <'> No idea if there is a set age, as all the professionals I've met just tell me it's a wait & see game! Nikki.

Have read all the other DLA posts and cannot find one that mentions this, so sorry for another one! Ds3 got his official diagnosis from the paediatrician today, so all the fun now begins! But when I was talking to the Homestart woman this afternoon, she said that know he has an official diagnosis I should apply for DLA for him.............. is it possible to get it for one so young with autism? I know he is autistic, but cannot see just how different he is from an NT child of 2yrs 4mths IYKWIM. It it madness to even try? I'm still waiting to hear back about ds2's renewal, but hadn't even thought about it for ds3! Anyone tried it? Nikki.