melly

Hi Must be difficuly being left in limbo. We were for a while, but by then we knew anyway. As for your daughters behaviours, I would get back to your peads secretary and ask her to get your pead to do a referal to a behavioural specialist (behavioural pshyc or something) and a dietician. When we were without an official diagnosis, our pead gave us a 'provisional diagnosis' so that we could start accessing the services available to ASD children. May be worth asking the sercretary about that. I've always found that befriending the docs secretary is the best way of gettig things done, better than the peads anyhow!!! As for the nursery, maybe hubby could gently (!) point out that as none of them are qualified peadiatricians perhaps they could keep their diagnosis (or lack of it) to themselves!!!!! Good luck with it all. And keep reading this site, I've often found some good behavioural things to try just by reading other threads, some of the kids behav has been similar to my little one and then the answers/ suggestions we have adapted and tried. Melly

Your IQ score is 126! You have a strong ability to process visual-spatial and mathematical information and this, combined with your logical mind, means you are a Visual Mathematician. You can manipulate multiple parts of the picture (or problem) to come up with a solution and can understand the "big picture," which is partly why people may turn to you for direction. Like Einstein, your ability to detect patterns and your skills in maths and logic, make it natural for you to come up with ideas and theories that simplify processes for everyone. Guess my mum was right when she told me I should have stuck with the maths!

lil me and jill, i'm glad you think don't think I'm over reacting. Sometimes I feel like i'm just being a bit over sensitive. Good advice about getting the name and dealing with it later. I didn't get the name this time, but its not like these incidences are a complete rarety so i'll have another chance. At least with a written complaint companies would have a chance to address these issues with everyone. Some proper disability awareness training etc. How to respond to ignorant people? Perhaps 'with pride' would be a good answer

Along the same lines, I was in Tesco's 2day and the lady in front of me obviously knew the cashier. They were discussing one of the members of staff, I didn't hear what it was that he was doing 'on the shop floor in front of all the customers' but it was apparently 'discraceful' to which the cashier replied that 'if he has a disorder or something he should be in the warehouse where the public cant't see him'. I was disgusted, but couldn't say anything because if I had opened my mouth at that point I would have burst into tears. As parents we spend so much of our time fighting for education and quality of life, to have mindless twerps in tescos deciding that the old way of making sure 'these types of people' are out of the public eye is better, makes you feel sick. I am going to have to learn to hold my head up high and defend the rights of my son. But on a day when I feel a bit braver!

my little chap has a very screechy voice, not v high pitched, but pitched perfectly to go straight thro you! I am on a Hanen course at the mo for encouraging communication, but what these lovely SALT's don't quite get is that sometimes you just don't want them to be shouting - no matter what word it is!!!!!

Thanks Lil me, From what been written then it seems that we aren't doing badly at all! I know that we have been very lucky getting the small boy into the specialist nursery, so i will just ensure we make the most of the support and services that come from there. Thanks all Melly

Thanks Jen and Pumkinpie, I'll look into the Direct Payments, tho if its income dependant we don't usually do well - my hubby earns more than most of the thresholds, but not enough for us to be well off! I think I may have made my inital posting sound a bit like I am after extras just for me, (which would be nice) but I was more thinking of the services that the children can access. I just come across some people that get extra S and L for example, and I don't know if its because they pay for these extras, of if there are other services available that we don't know about. Thanks again Melly

thanks Jaded any one else? melly

I wondered if people would mind telling me what services you are accessing for help with young ASD children (my little one is 3) and what area they help with. My son is at a specialist nursery and we have access to the speech and language therapist there (very pleased with her) and also a clinical psychologist (help is a bit patchy as she is in on the days my son isn't). I read a lot about people using the CAMHS (?) team and OT's but I am not sure if they would be useful for us. I am starting to think towards the summer hols, a bit keen I know, but I am due to have another wee person at the beginning of august and I know this is going to be a rough time for the family. Especially tough for the little man to get used to the idea of being a big brother. I just thought if there was more help/advice/care services available it would be good to try and start accessing them now before I loose sight of my feet! Thanks all Melly

he - he

Great idea for a thread. This site is great for getting info and sharing things, but all too often it is parent/carers needing info and support to get throgh rough times or to fight for the rights of our children. I am not knocking that, it is a great service that people on this site porvide to give each other the support. But I am v keen on any positive stories, as you said to give hope, comfort and support. Help us thro some of the rough days by having a reminder of the good things that can happen. I have just started a Hanen, More than Words course, so I'll hopefully be able to give some positive stuff from that once we get going.

I have read that the main difference between AS and ASD is the speech delay present with ASD, but I don't think its quite that simple. As for where on the spectrum, we've not been told that either (had an initial diag when small boy was 2, followed by the real thing now he is 3). However, thro more reading (!) apparently children can move up and down the spectrum unitl they are about 6 when things become more settled. Once they are that bit older you can start to look forward with some idea of the future. It is a bit frustrating sometimes (ie trying to look for schools etc where their criteria state mid - high functioning), but I guess at the end of the day it doesn't really make a difference as children at the same end of the spectrum can vary so greatly n e way. Hope this helps a bit.... we'll wait for the big guns to come in with the real answer in a mo!!!

No idea what thats about, sorry! But I hope it goes as well as the opticians appt did - good luck

Mine is a left over of PND, but has never been given the chance to completely go away. Like with most people there is more than one 'issue' bubbling away which takes its toll.

Hi Berni, Sometimes I am not sure which was worse - I have a brother in law who would, every time we saw him told us that our son was fine, and that he would grow out of it, so and so was like that as a child and now look etc etc etc. We were fed up with trying to explain and point things out. Then suddenly said bro in law stopped questioning. I guess he finnally saw what we did! But that also meant he saw our little un as different. You'll get there, at least with some of them Good luck

Daisy I get v disheartned, like you, to read similar problems going round and round. Not just that this means there are families going thro it (as I am sure we will do too in time) but also that it means that the 'system' hasn't changed to make any of this easier. DLA refused first time in this house, but am waiting for another decision. As for statements....ahhhggghhhh got ths first lot of stuff in the post yesterday and am trusting that this forum and a few of the nicer proffessionals in this world that we have come across will help us thro that relatively unscathed. Small boy is only 3 so I am looking at this one as a practise for the 'real one' ie next year when it will effect school. keep the good work up

A difficult situation. First of all, best of luck whatever you decide to do. The only thing I can think of would be to make a call to social services, they aren't allowed to tell someone who raised the concerns if you ask them not to. Otherwise perhaps your mum may listen to you if you explain that you have concerns for your sister which are completely seperate from your and her differences. Hope someone else has some better ideas!

I too forgot to copy my form, but I rang up and asked them to send me a copy and.....they did! Might be worth getting that, then when you do go again, you'll have it as a reference

Stephanie I agree about the form, it is hard work and can be q emotional too. But don't not do it b/c others may or may not be 'more' entitled than you. Everyone has the opportunity to do these forms, and with some help from CAB, or Disability alliance etc it wont have to be so hard next time. So take your time and then when you are ready go for! You prob deserve the extra pennies that could help with a few extras for the little one. Good luck

My sons was refused just before chrimbo, the long and the short of the statement of reasons was that at 3yrs he does not need substantionally more assistance than any other 3yr old. We requested a statement of reasons - they will try to do this over the phone, saves them having to push the print button! But get it in writting. Then you can ask them to look at it again (we wrote that their failure to request any further info from the listed sources hindered our chances - so they have now requested some info from his nursery). Then you can go from there onto appeal if you have to. When you apply, whilst you would try to pitch it to get one level of award or another they are supposed to look at it and see if you are entitled to DLA at any level. Best of luck

Yes these little things can keep us very busy! But I think that sometimes its only our won guilty consience (sp?) that makes us do that little extra. There are not that many three yr olds that would be happy to spend all moring on the cbbies website! The only reason that my little one doesn't is because (with my NT logic) I think it surely cant be good for him. Mind you if i did leave him on it for a whole day I think i'd be doing something other than the house work!

My son is NOOOOO way near toilet training yet, but I have been thro it with my NT daughter and that was a struggle, so I do sympathise! We have a behavioural therapist/psych attatched to the nursery he attends, and during a general parenting session she spoke of some ways to make toilet training a bit smoother. She said that for children happy to poo in their nappies, but not on the toilet you could introduce them to the loo by putting their nappy on first and then sitting them on the loo. That way they would poo happily on the loo, but still into their nappy. Stage 2 sounded a bit bizarre, cut a hole in the nappy at the back, put the nappy on as before then sit them on the loo. In theory they poo whilst in their nappy but the poo goes (mostly!) in the loo. Then you are supposed to show them where its gone etc. Then slowly work towards getting rid of the nappy altogether. As I said, I haven't done this so I have no idea if it works or not but it may be worth a try. You might be able to get some more bizarre ideas from the NAS website or one of their leaflets/booklets. Either way, best of luck Melly PS my daughter got over this hurdle thro complete chocolate bribery!!

Great idea for topic. I am on here almost everyday, reading mostly, looking for ideas and answers, or sometimes being just plain nosey! Lots of it makes me well up. Its great to read some happy/positive things, great to have a smile! This wkend we saw something new in my 3yr old. We went for a walk through a park which has one of those fitness trails, my son was trying to copy his big sister (4.5yrs) climbing and balancing, he even climbed a tree! We were there for a whole happy hour with them running around, playing together, holding hands the lot. He enjoyed it so much he even took his coat off - we can only presume that meant he wanted to stay!!!

Mind you, on re reading your initial topic, he may not appreciate going for a blood test!

Hi It is possible to have a blood test done to check a childs immunity after the first MMR. As such if their immunity levels are high, they do not need to have the booster, if they are low then you will be advised by whoever does the test to re immunise. Interestingly my consultants opinion is that 'if' there is an asd - mmr link, it would be due to the measels part of the vaccine, but that link could not be ruled out as a seperate vacc. either. Some GP's will do the test if you push them, some areas you have to go privately. I believe the 'JABS' websinte would give you details of private clinics. Melly