NikkiSmith

My 5yr old has a Crelling Houdini harness, in our cars & on school transport - they are great as the three seat belt buckles are behind the seat, but an absolute nightmare to get on to an unwilling 5yr old when you're on your own! Also, if your littlie ends up looking strangled by the harness, he may need to sit on a booster seat (as mine does in his school taxi) a great tip, that might save you the trouble we have had, is tie the booster seat to the actual seat in the car - my ds discovered that if you don't it is very easy to get it out from under you and then slide out of the Houdini harness!! Good luck! Nikki.

My eldest son is the guinnea pig at his school - the acting head invited me in to go through the CAF paperwork with her and then went back to the LEA to checked she'd done it all properly (as it was their first one) and she then sent him home with a copy of the final version. I have just had a letter through the post asking me to attend the (TAC or something!?) meeting with her, his teacher and someone from the locality team - so it's sound like they are doing it the correct way I guess... This is all to get the powers that be to realise that I have a very stressed out 7yr old who desperately needs some sleep - in our house there is no chance as the two littlies don't need more than 3 or 4 hours kip and then disrupt the whole house! Good luck with it, Nikki.

Hi all, Sorry I only ever get to post here when having problems and needing help and here's my request for some more! I am currently having a battle with social services about respite. I already receive one night a weeks respite for my 5yr old and I am incredibly grateful for it, but I am desparately sleep deprived as neither of the younger 2 boys sleep well (yes, we have tried most medications going and they do not work) Out of pure desperation last week I called the social worker and told her I couldn't cope and needed her to organise respite for both the 5yr old and 3yr old so I could get some sleep - she and her colleague both came to see me to tell me they wouldn't do anything! I asked them to put this in writing as I could not believe that even with me begging for help they wouldn't do anything, so I now have a great letter that states: "The Children's Services Department does not Accomodate children under section 20 of the Children Act 1989 when parents or other family members are able to provide for the children of their own family." Can they really just do nothing? What else can I do to make them understand that I really do need some help with my two autistic children?? Life is becoming a harder struggle by the day (the latest being that my 5yr old can now escape his Houdini harness on school transport and therefore they won't take him any more as he is no longer safe - so I have to!) Nikki.

My other half loves it! He finds talking to people on there so much easier than real life - he's been using for a while now and loves being a fox! Nikki.

Thank you all for the replies and the info - I sent him yesterday dressed all in navy, including his fleece that he stroked all day, but had a note in his school book saying that they felt he was doing well getting his uniform on at school and didn't want to lose the progress he had made!! Am still waiting for the teacher to call me, but as he's off sick today I doubt she will. But I am most definitely prepared for battle now! You're all stars, cos knowing he's not the only one is great - thank you. Nikki.

We actually have the OT coming after school on Tuesday to look at his sensory issues - maybe she'll be able to help! Interesting that uniform is only a suggestion - I don't understand why they are so insistant on him wearing it. I don't think his uniform is the reason for not wanting to go to school, as even at the beginning when they didn't try and force him into it, he wasn't keen....... Tomorrow is another day..... here's hoping school understand where I'm coming from. Thank you both for replying

Is school uniform compulsory? My autistic 5yr old son attends the local special school and since the end of term in December has begun to refuse to go to school. He has limited speech that's understandable, but he keeps repeating "No bus" "No school" No Sunbeams" (his respite, one overnight a week) "No Banks" (for no thanks!) He won't wear his school uniform and although I keep trying, it seems like an battle I just cannot win at the moment, so he's been going in wearing whatever clothes he wants (and at the moment we are getting crafty enough to work out if he stays naked, mummy isn't keen on taking him anywhere!) School keep telling me it's just a blip and to send his uniform in and they will put it on him..... he hates it and fights them and on Friday he got of the school bus very distressed and the escort said it had taken them until 2.45pm to get his uniform on him and during all the fuss he missed his drink & biscuit, upsetting his routine even more. Getting him on the bus is a nightmare (though there have been a couple of times that he has happily climbed on the bus sat down and just stared into deep space) but most mornings I have to put his heavy weight over my shoulder and fight him onto the bus and then pin him down and help the escort and driver to get his houdini harness on him. Every morning it breaks my heart, but it's no better if I take him to school (as I have done on the 3 occasions we couldn't get him strapped in on the bus.) I feel like I need to pick the battles I fight and the uniform issue isn't top of the list (getting him to school is!) Nobody can find a reason for him being so anti-school, just that it's a blip! Can I tell them to stop fighting him to put his uniform on? He is much happier to go wearing a t-shirt, fleece, jogs and trainiers - not even his bright coloured clothes, usually just blacks and blues. All comments and ideas are welcomed, please! As I am toatlly stumped and schools best suggestion is to see the paed (cos she'll wave her magic wand and sort it all, won't she!?) Sorry for the very long mutterings, Nikki.

I can't do anything clever, but I can say Happy Birthday M! I hope you have a brilliant day! Nikki.

Hi Sarah, My yougest ds was thought to "possibly be on the spectrum somewhere" since he was 2yrs, but we got his totally "100% definitely on the spectrum" diagnosis on Monday - he was only 3 at the very end of November. I know he is a high functioner (particularly compared to his 5yr old brother) but still he is a challenging little fellow! <'> <'> as I understand the shock factor when they tell you just like that, but at least they didn't drag it out for you and are giving you some help. I wish I knew what came next too.............this time is so different from my other ds's diagnosis! Nikki.

Those two are truly amazing! It's fantastic to see the successes of parents who manage to make a difference!

Elun, I had exactly the same issues about this name for the review when I went to one about my son's respite a few weeks ago. It really seemed to put my back up, the fact that he was lumped under the same heading as children who were in the care system - my social worker told me if I wanted the respite, this was something I would just have to put up with once every 6 months! I guess it's just the crazy way they categorise us our kids! Hope your reveiw goes smoothly and that they come up with some ways to make him more settled and eager to go there <'> Nikki.

My other half took his private diagnosis letter to the GP, who was really enthusiastic about getting him some help..... We both thought this was gonna be great, but all that happened was he got an appointment with the psychologist once every 4 weeks (and even then she asked to see me for one session instead to find out what he was like really!) and after 2 sessions with him, she said that he was more than she could deal with and that was that! It really is a joke. Good luck! Nikki

My 5yr old ds goes to a council run respite care place one night a week (they collcet him from school on a Wednesday and then return him there on Thursday morning.) It took me getting to breaking point, over a year ago, before they offered us anything. I am so grateful to them for the break and their helpfulness (they continue during school holidays and if I need to change the day or I have an overnight hospital appt, they usually manage to take him.) He's on the long waiting list for a Link Family, but they are short of foster carers, nevermind ones who could attempt to deal with my son! We did also have Mencap respite of 6 hrs a week (usually a support worker taking him out after school for 3hrs twice a week) but this all got to be too much for him to deal with. I know we are very lucky to have so much, but it didn't happen easily! It's crazy.

I managed to catch that bit (in between changing digger dvd's!) She looks like a fantastic teacher to have! But I think your son was fab on the clip too!!

I always thought it was just my off the wall child who did this! He loves to eat salt, pepper, oxo cubes, flour and anything else that you really wouldn't expect anyone to eat on it's own! He pours things on the worktop and licks them off! Maybe he's not so odd after all......

ooooooh! I didn't know there would be books to buy! That's me happy then, I can even get my retail therapy kick whilst I'm there. Sparklies? What sparklies? Did I promise sparklies? Can I come sparklie shopping with you? Nikki.

You definitely will be - I'm dragging you along no matter what! Nikki.

My 5yr old loves his dummies - but they have to be a particular brand and only the latex ones and only when they are new and smell still! He can't go anywhere without them and usually he has about 1.! Even if I think I've got them all he still has secret stashes everywhere. He stucks marbles (only accidently swallowed one so far!) but the rest of the things he puts in his mouth he eats; like dirt, sand, worms, snails (gawd those shells crunch!) so definitely pica with him. Sorry that doesn't really help with how to stop him, but I haven't found anyway that actually works yet.

Hi rmt, I am no expert on it all, just a parent who was fed up with the lack of support around here! I'll go and PM you. Nikki.

I am going too! I booked it ages ago and have just got the e-mail with direction and parking permit which is good or I would have forgotten it!! Anyone else coming too?

Hi Stressedmum, I am also working on the OT and SW for a loft conversion so that we have space for a sensory room - my OT told us that as long as it was still the family home it did not actually matter if the child it was all done for still lived there or not as nobody actually checks these things! Good luck with the Disabled Facilities Grant - it is by no means a fast and easy route to take. We are still waiting for ours and it all began over 18mths ago. I would suggest looking for a company who knows what they are getting into with DFG's as they are not paid until the job is completely finished and signed off by the council, OT etc! If you could do it in an existing bedroom it would be far quicker, but I have no hope with my littlies as they all ready have huge (lack of) sleep issues and everyone keeps telling me to not make the room stimulating in anyway. Nikki.

With older kids, teenagers and adults, I am totally out of my depth! My boys are littlies still and living with a 38yr old with Asperger's doesn't make me knowledgable (....just completely bonkers usually!) I know the other local group were looking into groups for adults, but found that they didn't want to meet or go out anywhere with more Aspies! Not the easiest of things to organise, yet people want something. Nikki.

I set up a whole new support group (I was originally with the new local NAS Branch, but there's a mad woman in charge of it!) so I am now officially running a voluntary group that is proving to be very popular! I am amazed at the amount of people I have met in quite a small area. We might only be small at the moment, but we're growing and I am getting much better at asking for things for free! I love coming here too, but rarely ever get the chance to post Nikki.

Anne, I'll keep my fingers crossed for you! I am just waiting to hear back from our new replacement SW as to whether they will take on my youngest as well now as he has an ASD too or if they will want to wait it out until his diagnosis is more specific! Our OT in notorious for being a nightmare, but having got all other professionals to agree a SafeSpace is not the answer for ds2, she seems to be coming around to the loft idea...... Ask everyone and anyone, tell them what you are doing and why and anyone with half a brain cell should be able to see that it will help family life chug along smoother than it does now. Keep us posted. Nikki.

Anne, I think if you can get a social worker it would be a huge step in the right direction - I was told by my SW that AS doesn't qualify for the children with disabilities SS team here, but it has to be worth asking. I was under the impression that the grant was only available via SS and their OT's, but I could be wrong! We are still at the paperwork stage, but I was told if the DFG + an extra �5,000 from our local council didn't cover the cost, it was possible to apply to charities etc. but I suspect we would have to fund it ourselves coz of my partners earnings. The DFG is no longer means tested, so depending on how much your conversion will cost, it shouldn't, in theory, cost you a penny. When the surveyor came with the OT he said the only way we could do the loft would mean losing a bedroom for a staircase, which was crazy, so I had a guy from a company who did loft conversions (and knew all about DFG's and not getting paid til the job is finished and signed off!!) who came and measured up and drew basic plans that said we needed to turn the original staircase around and not loose a bedroom! He didn't even charge us, just said that when the DFG was given the go-ahead it would also cover their fee. Sorry, that turned into an essay! Good luck with finding anyone else who's had one - they are a rarity! Nikki.