Deedee

We went through loads of assessments over the course of 2 years with our son the ADOS being one of them.We also had school visits/observations,3 questionnaire type things and meetings with various psychologists.They also did a video of him during his ADOS test which I watched through a two way mirror.This was mainly one of the psychs trying to get him to interact and play but they took everything he did into account,even the fact he didn't bat an eyelid when I left him in a strange room with someone he'd never met before.I knew by the age of 2 my son was 'different' and by 3 I suspected Autism but he was only given his 'labels' at the age of 6.I know what its like to be in limbo as some authorities and LEA's (ours included!!) won't lift a finger til you get that label sadly.The other side to this also is is once we were officially diagnosed it was very much well thats what he's got get on with it!We were discharged from CAMHS and that was that!

Fiorelli I could have written the exact same thing,sadly our school has the same attitude..My son kicks off the minute he comes out the doors.I wish I could take one of his teachers home with us one day so they can see whats its really like.. I've been following your story and just wanted to say hope things start to look up for you soon <'>

Hope all goes well for you.It took us 3 years to get them to come out to us but finally we now have some help.Do tell them how it is, don't hold back.. they don't judge you and do ask about all the different options they have available as respite.They will tailor it to suit hopefully! Best of luck

My AS son also has probs with low muscle tone,flat feet coordination probs etc.He has had no input from anybody about it but my middle son (NT)who has scoliosis and flat feet,superflexible joints as well as a whole lot of other probs associated with this sees the orthotist at the local hospital and he recently did a Gait Analysis Test.Basically they video you walking then send it off to be analyzed by a specialist firm on a new computer programme and this in turn advises on the best form of correction procedure or therapy.Might be worth asking if they do it where you are?He has now had his lifts adjusted and his exercises updated and the report was very thorough.

I wonder if its a different name for the direct payments system? I use this and can highly recommend it Basically SS agree a package of care/services and funding then you manage it does that sound like it??

My OH although he is generally supportive of our son I feel he still doesn't quite 'get' autism...There are times I find myself reminding him why M does or says the things he does when I feel he of all people should understand.This in turn causes resentment between us (basically I get the 'ump with him ) I do feel a lot of the problem is that I am our son's main carer,appointment maker etc etc he just doesn't get involved,when anyone phones up about M he always passes me the phone telling them my wife deals with all that!!

We have just started respite after 3 years of resistance and to be honest its worked out better than I could ever have believed possible.. I was talking to our local housing officer one day about it ( she had a son who had respite) and she convinced me to at least hear SServices out.We had a meeting and went through all the various options from couples to befrienders to overnighters and I couldn't face just handing my son over so we came up with direct payments instead.Our local Scill centre advertised for us for someone (We get 3 hrs a week in termtime and 7 during the hols but can jiggle if needed)and they handled all the interviews and paperwork all I do now is sign a worksheet once a month!!We interviewed 4 people and we now have a wonderful 17 year old 'boy' who has a brother the same age as M and by all accounts is his double!He has fitted into our family with ease and is a godsend.At present he mainly comes over to play but we are feeling very confident that when the weather gets better trips to the park will come too. With our son we have to be detectives too to find out what he actually means or wants sometimes its a nightmare but often it actually gets solved somewhere along the line,even if it is months after With the cat thing have your neighbours got a cat that side??It sounds like the sort of thing my son would do to next doors dogs It makes sense to him they can hear him and he forgets there's a wall in between!!

Hi JJ's mum I'm new here too but my son is a little older now at 8 and I've been exactly where you are now.I call my son my little 'enigma' as there's noone quite like him and as he's got older the guilt still kicks in as we realise now(sometimes!) just why he used to and still does certain things..We are learning his triggers to this day still for instance on a rare outing to a shop in a reasonably quiet high street he suddenly crouched on the floor screaming fingers in ears.The music and lights hadn't had any effect which it normally would have and some hours later he managed to tell us it was the lorry?? This being a lorry going past with the tailgate banging around 100 feet away!! As for the school I would have a good look around and take advice from other parents?professionals then go with gut instinct.My son was really 'wild',non verbal,aggressive etc so I didn't even think he'd get that far BUT we were very fortunate with our local mainstream school even though he was undiagnosed we fell on our feet with a teacher there who had him for 3 years in a row to whom I shall always be indebted to.She took on board everything we said and worked tirelessly with M.We were refereed to have him diagnosed through the school too.He still has no interest in drawing or writing but loves computers and 'cooking' and is even starting to read!!! Unfortunately now the social and communication side is becoming too hard for him to continue in mainstream education but do look into all options available Good luck!!

Hi Loupin we also had a very long drawn out 'battle' for a statement but finally used the IPSEA template to request a stat assessment and got M's statement through for 12.5 hrs a week.M has poor language/processing difficulties etc and his motor problems give him no end of trouble with writing.We found chunky pencils helped him rather than the rubber thingies which help their grip as by the time he got his fingers 'right' on the grip he forgot what he was doing bless!! I,too get the 'well he's been fine at school all day' routine as he launches himself screaming at me off the top of a waist height wall at the end of the day and proceeds to kick me all round the playground!M tends to be very introverted now at school which they see as a good thing so when he comes home he lets rip at us..Year 2 is a very stressful time and the senco should really be helping to push for a statement now I wish you luck with your quest

Hi Everyone I've been lurking for ages and finally got round to joining just before xmas.It's taken til now for me to get a quiet moment to post I'm Denise and mum to 3 boys youngest of whom has ASD,APD,speech and language delay and various other bits and bobs but he's just our M! He's now just turned 8 and although every day is unpredictable to say the least I think we now finally see that there are also some positive aspects in our lives due to his differences as well as the usual ups and downs associated with our special kids.. We've had the usual fight to get his statement and ended up after nearly 4 years with 12.5hrs per week which we are grateful for but now revving up to fight for a special school or more help as he's starting to struggle in mainstream. My middle son has a spinal problem so is in a bodybrace for 23 hrs a day also which doesnt really help when M is in meltdown mode!My days like yours are filled with appointments and phonecalls and stress in between lol but although sometimes we feel like we are taking 2 steps forward and one step back we are making progress.