NikkiSmith

I got the most gorgeous card from ds2 that he made at school (with plenty of help!), but the best bit is the pyramid shaped box he coloured at his mencap afterschool club that had a peppermint cream in it and a warning that it was probably not actually edible! Judging by the smell of it he's put half the bottle of peppermint flavouring in it and the colour looks like it was supposed to be white......! Bless him. Hope everyone else has a lovely relaxing day. Nikki.

Thanks for those links Bagpuss, I've seen the direct.gov one all ready & have tried calling the contact number, but the woman I apparently need to speak to is off sick until the 23rd, so I'll just have to wait for that one! The OT tells me the means testing bit has definitely been scrapped, so they will foot the bill. I hope moving to a bungalow proves easier for you all than having major work done. Thanks again, Nikki.

I filled in DLA renewal forms in January and happily sent them off and today in the post I got a letter from the paed with the form the DLA peeps wanted her to fill in about ds2 with a letter saying "we cannot fill these forms in now as we are not paid to do so." Just like that! So the paed who has said that there's nothing else she can do for ds2 cannot even fill in a brief flippin form for his DLA! Luckily health visitor and social worker are happy to write honest, damning reports. Does that mean they still get paid to do this? It's a joke! Has this happened to anyone else or is it just ds2's paediatrician being extra helpful? Nikki. he's currently getting higher rate for care but am hoping to get the mobility part too!

A daft as it sounds, it good reading this topic as it's making me realise it's not just me that hates the school gates and dreads going to support groups (and has to really psych herself up to go, but more often than not I talk myself out of actually going) It's very hard finding people who truly understand life in this house and don't judge me. Maybe I'm just too self-conscious.......... I find throwing all my energy into redecorating the house far easier then dealing with other people - sad huh! Running sounds like a good way to clear your head and meet new people............. if only I were much fitter and capable of a little co-ordination! Nikki.

Right, having looked into the SafeSpace thingies and pretty much ruled them out for ds2 I am trying to arm myself with as much info and assertiveness as possible for the OT coming on Thursday next week. Has anyone manged to get one of these grants? and even for an extension or loft conversion? Spoke to the social worker today who says the grants are issued per child, not per household as I had assumed! Which means that as all the paperwork for ds3 is chugging along nicely, we could access twice as much... So what does it take to actually get them to do major building work? TIA, Nikki. I feel like I am learning so much, so quickly! This is one scary rollercoaster ride.

JSMum - the price is socking isn't it!! I cannot get my head around how a metal frame with industrial pvc stretched around it and can all be installed in 90 minutes can cost over �3000! Nevermind adding in any extras or accessories. Luckily the OT says that this grant has a limit of �25,000 and you only get one go at it - so if they install a safespace now and spend say �4000 on it, then from what I understand, that's it. We cannot go back to them and say it hasn't worked can we now go down the huge extension idea? The shed sounds like a much more useful space! (can I come and hide in it please?) And that was my theory on the loft conversion, if he had more space indoors that was only for him, he could have his minimalistic bedroom for the few hours he does sleep and then another room for entertaining, but relaxing activities for the rest of the night so that I could actually get some sleep. Must try and find someone who has actually succeeded down this route really! Nikki.

Thanks for the replies - Mumble your repliy really did help to get my head around it all. After I posted on here I rang the SafeSpaces company to ask lots of questions and the more I asked the more it didn't sound right for ds2 and it really doesn't seem to be the kind of thing that is going to last him for long! Next I called the social worker to sound her out about it and she said to listen to the OT's ideas and if they really weren't much use she could organise a meeting with several professionals to assist the OT to understand the manicness in this house. SW then proceeded to phone the OT to tell her to tread carefully with me! The OT came at 4 and stayed for over an hour; she admitted that when she came the first time her remit had been that the windows and doors needed locks........ well the referral was made over a year ago! She didn't know of anyone around here who had a SafeSpace and said the only family who were going to have one decided against it in favour of using the Disabled Facilities Grant towards having a loft conversion!! I think I prefer the idea of using the loft to gain more space and giving ds2 and ds3 a multi-sensory room that they can chill out in. So she is due to return next Thursday to see what my feelings on her suggestions are and what I want to happen next. Sorry that was so long! Thanks, Nikki.

The OT came this morning and this was her suggestion for ds2's room - www.safespaces.co.uk I can see her point, if ds2 is totally padded and safe he cannot hurt himself but surely sealing him alone in a padded cell won't mean I can ignore him screaming and go to sleep! Anyone have one and can convince me I'm wrong? She wants to swap his room over to his younger brother's smaller room and give him a SafeSpace, but my gut instinct says that changing his room over and enclosing him all night won't help him relax and sleep, just stress him out at being trapped! Any replies would be good as she is coming back at 4pm to meet ds2 and to hear my views on her suggestions! Thanks, Nikki.

Hi Elun - firstly have some <'> I don't have any real answers or solutions (coz that would be far too easy wouldn't it!!) But I am having the exact same problem with ds2 (4yrs!) He is extremely violent and aggressive towards me, but especially his younger brother and even his older brother! School keep reassuring me that it's likely to be due to his frustration and once his speech improves his temper will calm............... but I can't see it happening! And even they seem to have their doubts on that theory. I dread him getting older and stronger - I am struggling now, what will happen in a few more years? I have all ready looked into residential schooling as I feel it's inevitable; both his brothers are suffering terribly with him here, but then again with ds3 going down the same route I'm not sure it would make much difference here really! KarenT - It didn't even occur to me that I might be able to get a place on the NAS Anger and Aggression course as the blurb said for adolescents!! Rats! There was one near me next Wednesday and I'm sure all places will have gone! Oh well next time I shall jump at the chance! ETA: I thought there was a course near me, but got that wrong too! Nikki.

Our paediatrician put ds2 aged 3yrs straight on to 6mg a night! He never mentioned introducing it gradually - does that make any difference to it's effectiveness? The magic of it wore off very quickly (after a month or so I think!) Nikki.

Social worker referred us to an OT (there is some difference between SS OT and an NHS one?) in November and I got a letter saying we were on the waiting list, but it was over a year long, so thought nothing more about it. End of last week I got a call from SS OT saying she was free on the 13th was that ok. Well the woman must think I'm a gibbering nutcase as I could barely speak, I was so shocked! She wants to come and talk to me in the morning (without ds's around) and then will come back again after school to meet ds2 & 3! Two visits in one day I know SW was going to get in touch with them and see where on the list we were, but now I'm wondering what on earth she said to them! I don't know exactly what I am supposed to say to her - what can she do for us? (I know that's a really silly question, but I'm still wearing my "L" plates as far as all these professionals involved in ASD stuff!) Anyone got more of a clue on such things? You all seem to be such fab experts around here. Nikki.

I am keeping my fingers crossed for Monday morning! I have his booster seat and harness all ready and waiting (though the fuss the driver made about having to take it off the minibus on Friday was ridiculous - she was muttering the whole time that it was stupid to move him and what difference would it make to a silly boy being on a different bus, just more people he can upset!) I bit my tongue and walked away thinking thank goodness that was the last time I would have to deal with her! Roll on tomorrow! Thank you all! Nikki.

Yippee!! The transport office called me today to tell me that ds2 will be on a different route as of Monday! He will be in a 7 seater people carrier with a brilliant escort who will sit next to him and hopefully make the experience a more pleasurable one!! Cannot believe asking for a copy of their policy was all it took. Thank you!!! Nikki.

Thank you both for your responses. I rang the LEA who put me back through to transport, who agreed that they had a SEN transport policy and then questioned who I was and why I wanted it! So he took my child's name and phone number and promised to look into the situation - which is odd because he said that weeks ago! I think I'll get in touch with IPSEA and see if they can help with the right words to use! Thank you again! Nikki.

I've had a quick search through previous messages and cannot find one covering this, so hopefully somebody can point me in the right direction. Ds2 is 4yrs old and goes to a CLD school and currently goes to and from school on a minibus with 3 other children, an escort and a driver (neither of whom are particularly nice to ds2 because he's difficult!) The other children all do as they are told (2 are non-verbal and the third gets on after ds2 so I don't know her) and sit still and are quiet...... ds2 fights them at every point, throws his shoes and dummy at them, takes his socks off and tries to eat them........screams, wails, kicks out at the escort etc. The escort sits at the front of the bus with the driver, even though I have spoken to the transport office who say the escort is supposed to sit in the back with the children! The driver rarely turns around, but when she does it's only to tell me how awful my ds2 has been I am having to physically carry him (kicking, screaming, biting me) to the bus in the mornings and get on with him to fight him to sit on the booster seat whilst the escort tries to put his harness on. It is a heartbreaking experience that happens daily! He screams at me the whole time - but the escort frequently tells me that it's ok because "he shuts up as soon as we get to the end of the road." She tells him that he is a naughty boy and that "naughty boys don't get to keep their shoes and socks on" and that he is silly. School tell me that by the time he arrives at school he is absolutely fine! I cannot keep doing this everyday, it is a nightmare, but only with this bus! When he was part-time in the nursery he went on one bus in the morning and home on another at lunchtime - no problems at all! The escorts sat in the back with him, the drivers were chatty and pleased to see him etc. I've spoken to transport who say the best thing they can offer is if I take him to school in the mornings they will pay me a petrol allowance! This is impossible when I have 2 other boys who need to be places at 9am too! How do I go about fighting to get a taxi for him? with a sensible/nice/normal/reasonable escort! Who do I need to fight? (LEA? transport?) and how do I go about it? Sorry for the moaning, but this has been going on for too long and I can't keep fighting him. Thanks, Nikki.

Hi, I have only been with my partner for 6.5yrs so to the pair of you who have survived over twice that! As much as I love my dp, I find living with him very stressful. It sounds awful but I am always grateful when he goes away to work (he goes to Baghdad for 8-14wks at a time) I call it my time off for good behaviour, because no matter how hard I find it dealing with 3 boys, putting dp in the equation too creates mayhem! It was getting my dp's diagnosis (before I went totally mad!) that made me realised ds2 was on the specctrum too and was a huge wake up call for me. DP thought that he would be able to "help" ds2 as he would know how he thinks etc. but it just doesn't happen as he cannot put himself in ds2's shoes. I make all decision around here, whether they are small ones or huge ones - I deal with everything and he struggles along in his own world. As for the fidelity - I always wonder how many females look elsewhere for what their relationship lacks, but then again, how many of them would actually have the time or energy! Sorry for a very negative sounding post. Nikki.

Thank you Flora & VS - It is good to know that it can get easier as they get older! I've tried the gf/cf diet with ds2 but it was torture for him and for me. Adding a battle over food as well as everything else was a nightmare. He only eats Tesco prawn cocktail crisps (and no other brand will do!) and strawberry jam tarts. We eventually managed to get a urine sample and sent that of to Sunderland University for the testing but it came back saying it probably would have a huge effect. I have tried to get him to take all the eye-q/fish oils stuff but he can smell and taste enything that is different, hence I can barely get any medicine into him! Have been claiming DLA for ds2 since he was almost 2yrs and am waiting to hear back about the renewal forms I sent of at the end of January. He gets the higher rate for care and nothing for mobility (applied 9months ago and was turned down!) but am determined to get it this time as everyone who deals with him thinks he needs it!! I get the CA bit as well, which I have tried allocating to using for a cleaner, but oddly enough there aren't many who are brave enough to come here more than once! ds3, 2yrs, has vision problems; the orthoptist thinks he has less than 80% visio in his right eye, but he won't co-operate enough for them to actually determine how bad it is. He has floppy ankles according to the podiatrist (I thought he had pigeon-toes!) which means he spends an awful lot of time tripping over his on feet and landing flat on his face. Last week I managed to dislocate his wrist (god I feel so guilty!) he made a run for the road and I grab his wrist and pop! It took the nurse at A&E a couple of attempts to get it back in and he barely flinched but the nurse did comment on how floppy his wrist were! Anyway, life is a little better today, my dad is off work and coming to play with boys for the afternoon. Half-term is almost over and we can resume the normal routine next week. Thank you all again, it really is sooooooooo appreciated! Nikki.

Thank you all so much for the replies, I really didn't expect anyone to reply to my mad ramblings! But I am so glad nobody thinks I am crazy. As far as ds3 goes, until we get the right piece of paper from the NHS paed nobody seems prepared to listen. He goes to a childminder for a couple of hours on a couple of mornings, just so I have time to clean up ds2 room (as he still spreads the contents of his nappies everywhere!) without him clung to me. I have spoken to the fab pre-school that ds2 went to and they are happy to take on ds3 but are just trying to organise 1-2-1 help for when he starts in May - so I am looking forward to that! My parents really do try to help as much as possible but my mum has MS and is in a wheelchair and my dad works full time and has to help my mum, but they do have ds1 at the weekends to get him out of the chaos! They've tried having ds2 or ds3 as well but because their bungalow is open-plan it's an absolute nightmare trying to contain them and the damage they can cause. We've been re-referred back to Homestart - we had a volunteer early last year, poor woman came once and then was off sick for about 6 months! So we are now back on the waiting list for another one..... but I won't hold my breath. I know ds1 playing up at achool is due to the mayhem of his homelife and he is definitely not AS because he's not my dp's!! Where as the other two stood no chance! With ds2 and the medications; Melatonin worked wonders in the beginning but it didn't last long, then he had Vallergan Forte which made him hyper and the chloral paediatric elixir made him totally uncontrolable and literally bouncing of the walls! Currently we're trying liquid parafin to help with the constipation as the paed thinks if they unblock him he may feel more comfortable and therefore sleep better........ Anyway, I should get back to the chaos - we've all been up since 4am and I'm totally worn out all ready! Thank you all again - it really does mean a lot that you read it and replied and you understand what it's like! That's the hard part of everyone I talk to telling me that they understand and I know they don't have a clue! Nikki. jlp - I rarely get the time to post on HB or anywhere else for that matter!

Hi, I don't find the time to post on here very often, but frequently read. I am hoping that by typing all this out it will make things seem better then they currently feel! I have 3 gorgeous boys whom I love to pieces, but I cannot deal with! ds1, 6yrs, is NT, but school say is very bright and starting to have behavioural issues (due to his hectic home life and lack of sleep!) ds2, 4yrs, ASD, playing up at his CLD school and home and doesn't really sleep! (a couple of hours each night is enough to keep him functioning, but he is not safe in the middle of the night alone!) ds3, 2ys, definitely on the autistic spectrum, also doesn't sleep that well and is permanently clung to me (known as the kling-on!) My dp, 37yrs, AS, has been working out in Baghdad since the middle of January and isn't coming home for another month. I want to sleep and feel vaguely human again! ds2 goes for his overnight respite tomorrow night, but it's almost pointless as ds3 isn't sleeping! Paed has given up trying medication to help with sleep as nothing works and she thinks it's just their genetic sleeping pattern as Dad sleeps badly too. ds1 hates his life in this house and wants to live with my parents (5 mins up the road) as he has had enough of ds2 & 3 (his words!) ds2 is becoming a nightmare to deal with; I struggle within the home, let alone going anywhere as a family as he is so unpredictable - even with him and ds3 in the double major buggy. ds2 fights, kicks out, takes his shoes off and throws them, sticks his socks are far down his throat at he can (he also does this on the bus to school, but it's half-term so that's next weeks challenge!) ds3 screams the most incredible high pitch scream if he doesn't get want he wants or things are not the way he likes them. It really is a joke trying to go anywhere - even the park! I feel like I shouldn't be complaining, I know I get a hell of a lot more input than others I have read about, but I am just not coping. The health visitor and social worker are fab, but the only thing they can do is offer to come and talk to me - but talking things through and going over it repeatedly don't make life any more bearable. My GP just keeps prescribing me prozac even though he knows I won't take it - he agrees that I am not depressed, but thinks I am very stressed and this is the only thing he can offer me! So can someone please pinch me and tell me it's all a bad dream and if not, tell me that I just need to get on with it and stop flippin moaning! Feeling better for getting it all out of my head, no replies needed! Thanks, Nikki.

Thanks for that Liz - I feel slightly better knowing what I am walking into. Krystaltps - I am grateful for the reply, I didn't know any better! Just got to be patient and wait for the appoinment to come through now. Nikki.

Yesterday I took my youngest to see a private psychiatrist who said that ds3 is definitely somewhere on the autistic spectrum, but unsure where as he's still so young. So we are now waiting for an appointment to see the child psychologist, at the same practice, who will do the ADOS testing and 3Di - but I can't actually find out much about it! Has anyone been through it? Some clues as to what to expect would be really useful. I should have asked whilst I was there, but I was a little shocked that he had agreed with me and not just sent me away telling me to stop being so paranoid! Thanks, Nikki.

No help really, but I am having to go down this route to as my son is getting harder to restrain in the car; he can escape from high back booster seats, undo his 5 point harness one etc. I am hoping that he can have a houdini harness in my car, just like he does on school transport - but no idea if these are any cheaper than the special needs car seat. Would be interested in knowing if you succeed in getting one via OT. Nikki.

Thanks JsMum - I've not heard of them before, I will have to look into it. At the moment Social Services are providing us with some hours with a MENCAP worker each week and are desperately trying to up it. Lisa - Melatonin worked perfectly on him for a couple of months and then stopped working (even the 6mg a night, which I was told the max.) The paed has tried Vallergan Forte and also Paediatric chloral elixir (which one sniff of should knock an elephant out!) but they both make him even harder to calm down. Have now been told that there is nothing else they can try him with as he's only 4. Nice to know I am not the only one living in a prison! As for playgroups, I rang the fantastic one that put up with ds2 and the lovely lady is looking into whether or not he can start before he's 2 and a half and have a 1-2-1 carer. So now I am just keeping all fingers crossed, I guess the sooner he's there the more people will observe his odd behaviours and he can get the help he needs. Hey ho, better get back to clearing up - I stupidly didn't lock the kitchen door and ds2 decided to go and "cook" with 4pints of milk and 15 eggs................. at least my kitchen floor will be spotless once I've done it! Thank you all so much for the replies and ideas, they really are appreciated! It's almost like having contact with the outside world! Nikki.

Brooke, Michelle & Elun - Thank you so much for the replies, it really is good to know I am not the only one trying to keep my head above water! I really do admire those of you who manage to work as well as deal with the home life It makes me feel daft for being a full time mum and still not being able to do it all right and fit it in. Now DP is away, it's just me and three boys. Even when the older two are at school I seem to spend all my time clearing up the destruction that's been caused in the house. Even though every door has a lock on it and the place is becoming more and more minimalistic the younger two still find ways to create chaos. My mum is always there for me though, even if it's just to listen to me while I rant. DS2 doesn't sleep! A 20 minute power nap is good enough to keep him going for up to 6 hours and no medication has helped (just makes him bounce of the walls!) DS3 is gradually getting worse on the sleep front too. I usually get to crash around midnight and then I and up and down repeatedly until I finally give in at 5am. We have a fab Health Visitor though and she can see that DS3 is odd! He lives on baked bins, he loves everything neat, tidy and lined up, has fantastic understanding but no speech yet and really doesn't get this emotion thing (ie. change in tone of voice, facial expressions etc.) is obsessed with lights, lamps, lightswitches and door slamming (they all have to be closed!) Oh and my 4yr old has the floppy wrists thing and 2yr old has floppy ankles, according to the podiatrist! Anyway, better get on with the chaos I call the morning routine! Thanks for reading my mad ramblings. Nikki.

I feel like I am sinking in very deep quick sand! I have a perfectly "normal" 6yr old, a 4yr old who has ASD (and proffessionals keep using the word severe) and now my 2yr old is beginning the multi disciplinary assessment process and I am sure he is AS - just like his father! DP is currently out in Baghdad (went on Monday and isn't due back til the end of Feb at the earliest) and all ready I feel like I cannot cope. Does anyone else have 2 littlies like this? and how do you survive? I know I am very lucky to have one night a week respite for my 4yr old, but still I am struggling to get enough sleep to function. Sorry, moan over. Maybe having typed it, that'll get it out of my system. Nikki. I don't really get the time to come on here and post except to ask for expert knowledge and insight from those in the know.