Me and nursery teacher discussed our concerns about ds today - feel so overwhelmed - long sorry!

[KaySamuels]

I have always had some niggling concerns about ds and it seems his nusery teacher has too. (He is 3 and a half btw)

He is toilet phobic so poos his pants

Is obsessed with toy cars and Thomas the Tank (knows every character's name and colour), and buses.

Lines up objects (not just toys)and becomes unconsolable if they are moved even slightly out of line. Same with towers of blocks.

He has a staple book, and a handful of dvds that he knows every word to. He got a new dvd recently and knew every word the third time he watched it.

Likes things to be 'whole' so a pizza is altogether like a 'window circle', they had a toy one at nursery today and ds was sobbing because someone removed a piece.Same reaction if a puzzle piece is missing.

He has brilliant vocabularly, but talks very formally like a little old man.

Struggles if routines are changed, likes to know in a morning where we are going, what we are doing, who is coming (I childmind).

Gets upset at nusery if an event happens without him being prepare for example coat on time with a prewarning.

I find I adapt conversaion to him as I know what helps for him to respond.

He has also recently developed an obsession with signs.

Teacher said she was pleased I came in to talk to her and had noticed the same things during written observations of him. Has said after half term will call in Head and senco team, with possibility of getting him someone in to nursery to work with him.

She was really nice and I was glad in a strange way that she had noticed but I feel so sad for ds. I don't know how this will affect him or what will happen - feel lik world has been plonked on my head upside down. Has anyone been through similar??

Er, thank you. No need for compliments though - I'm not that unusual as someone on the Spectrum.

If people really wanted to see those on the autistic spectrum "in action" as adults, try having a look at the message board "Ship of Fools". You can get to it by putting that into any search engine, then look for the community section and the "boards" bit. Oh and stay away from the Hell bit unless you like rather lively language (none of it mine...!). It's a debating site about Christianity, so apologies/warning to anyone whose faith isn't so, but there are many, many of us posting on there amongst the 'ordinary' other folk: computer programmers, university lecturers or students, church trainee vicars, engineers, people who own companies...

No way would I ever promise that your children will end up with a particular outcome - you can't tell quite what the future holds. But it shows the 'hidden side' of autism - the side that actually often turns out pretty ok with the right help and the right start. If only we could get the bloomin' psychologists to go there and have a look too, eh, instead of leaving people with the impression that "us as children" always resembles how we'll be as adults?

Amber - what sort of job do you do? I was interested that you said you ask colleagues to make rooms Aspie friendly - what does that entail?

Job? That's a complicated answer. I own a business, and I'm an adviser to the Church of England as well as a school Governor. I manage thanks to totally excellent teams of people who help.

Making rooms aspie-friendly is both quick, easy and cheap compared to things like wheelchair access:

Check for no flickering fluorescent lights, and please get them changed if they are starting to (even any flickering bits at the end of the tube), as it's like being in a lightning storm for us.

Close your eyes and listen for annoying sounds, and think whether there's going to be alarming sudden changes of sound level as part of any presentation. If so, and you can't change it, please just let us know in advance so we can make a decision on emergency ear plugs or just enduring it as best we can.

What does the room smell like? If we're going to be next to someone wearing a bottle of Chanel No 5 or strong aftershave, or be in rooms with a lot of incense being burned, etc, it might be totally overwhelming for us. Is there a corner/ near an open window if we need to move away from the source?

Layout: Do we know what it looks like, and if we do, have you changed the layout since then without telling us? Some of the scariest experiences I've had have been going into a church or meeting where all the chairs are in a completely new pattern. One phone call should be more than enough to update us, or a quick email or text.

Quiet area. It really helps to spend a couple of seconds thinking about a quiet area we can relax in for a few minutes if we need it, or otherwise we tend to improvise with the nearest loo

Agenda or instructions: Let us know what the plan is,and stick to it if you possibly can. It take away huge amounts of stress.

Physical contact: Are you going to expect us to shake hands, do some social hugging and kissing on the cheek and general social chatting? Not all of us can handle it. Just be aware that we may not be able to, and we're not being rude. Nor are we being rude if we can't do much eye contact. (It's like looking at the flickering fluorescent lights for us - can't explain it more than that.)

Once you're into the routine of thinking about it, it only takes a few seconds, and you've helped not only us, but people with epilepsy, allergies or extreme shyness too.

Thanks for that - my ds is currently being assessed for ASD. Would love to know what you advise the C of E on but perhaps too much info for a public forum. I work for the C of E as well but more in an office role.

That's easy to answer - I currently advise them on autism

The C of E has an autism advisor!!!! How cool is that

Depends who you ask. I think "Eek! An autism adviser..and one that Has Autism! oooh no....what do we say?!" is actually the normal first reaction from many churches . Early days yet. We'll get there.

Hi everyone sorry haven't been back on, been so busy.

DS was back to nursery yeserday after half term, his teacher said the edpsych is coming into school in July for another matter and should be ok to see ds that day too. She said if he can be seen that day it will be a lot sooner than if we were to book and wait for an appointment or him.

I have found a new gp practice and have an appointment on friday morning but am not sure what I should be asking for?? Who/what should I ask for?

Was quite embarassed yesterday his teacher said his behaviour is babyish in some ways (in others not), that he is obsessed with TV (he is I have to ration him), and when she asks him what he has done all he mentions is TV (even when we went on holiday he said he had watched TV). He tells me the same about nursery, can't tell me what he has done but names TV characters (turns out they have ome pc cdroms he likes). But we both know he does lots at home and at nursery, he just can't/won't discuss.

I feel like I am on an emotional rollercoaster of guilt, sadness, worry/anxiety, and defesiveness/protective over ds. I am also overwhelmed. Typed up the IPSEA letter last night and burst into tears.

Thanks TC.

I asked teacher if she thinks he will need help at school and she said yes. She was lovely, and said it is frustrating aswe both want to know what to do for best but can't yet until he has seen EdPsych.

Told my SIL yest who is normally great and she kind of rubbished it - 'oh they are all kid things he's fine' and 'I hope to god he's not'. I was hoping she would be a shoulder to lean on but I guess not.

I am quite low anyhow and am on ADs, so this has just knocked me I guess, have the morning off today so am playing duplo with ds.

I'm sure your SIL just needs time to get used to the idea - perhaps it hadn't occured to her that they could be more than 'kid things' and she wasn't sure how to respond. It must be a bit of a minefield for relatvies, I know I tend to forget they don't know ds as well as me.

It sounds like your doing a great job tackling things and it's great the teacher is working so well with you - I know everything seems to take forever and it is reeeeeally frustrating but you will get to the point where support is in place and it's not such a struggle. Hang in there and don't forget mumsnet.

Aw KAy chick i totally missed this???..poor you and ds..its nice that the schol are so good though teacher sounds very nice and like she really wants to help!

HAs anyone give a probably reason for this yet?
Your ds is lovely, so whatever the outcome, you will both be fine.

(i didnt know you were on ad's though..hope you are ok?)

No one at school has mentioned the A word yet outloud but I am pretty certain he is on the spectrum, but we need someone to assess him so he can be statemented for help in nursery/school as he is struggling.

Thank you all for your support, I seem to be having a really shitty bad few years, maybe I am getting all my troubles out of the way early on in life? {hopeful empotion} I just feel like I am walking on a cliff edge and am worried something small is going to break me and I will end up in a real state. I am trying to stay strong for ds.

Kay, this may be only a small positive, but if you ahd to go out to work, you wouldnt have been ehre to help your ds and would ahve felt helpless.

You cant drag new mindeees in, but i really hope you get some some and things ease up for you.

YEs, in my little knowledge of things like this, that is what it sounds like, but by any account, he is a happy healthy and clever little boy!, you have noticed something now and i know you will do everything to ensure he is supposrted and helped through this meaning he will ALWAYS still be your gorgeous, happy, clever little boy!, you are a fab mum, obviiously you're worried, but try and remember the good points, although its hard(ive been on ad's myself) thats the only way you can get out of that dark place...............lots of love and support to you chick

My head just keeps going in circles about me childminding as ds is not enjoying me doing it at the mo, but as I need to work I think it is the best option for now.

i know and like i said as we all have to work you have the better option even though you prob feel guilty(as i do, not giveing them all your time) you could be paying another cm to do what your doing...so its not all bad

www.mumsnet.com/Talk/2403/541660hey chick, another mum in similar position to you???

thanks for that link have posted

Saw your original post and thought I would add - hope you don't mind. I'm a secondary teacher and at our mainstream school we have a large number of children with Aspergers/on the autistic spectrum, many of them I teach. I know this is a long way off for you, but I thought it might reassure you to know what wonderful, high-achieving children they are. Happy, very talented, sociable and having had the support they need, ready to fly! One boy I saw come into the school at eleven and he has just graduated from uni with a first. Bless him! And he is not unusual. As many people have said getting the support and understanding early (as you obviously are) is crucial.

No booboomum I don't mind at all! Thanks for taking time to post, everyone has been so lovely on here, it has made such a difference to me.

It's nice to get differet people's view too, parents and teachers, etc.

Booboo - that's so encouraging. My ds has suspected Aspergers. How does their autism affect them then as they seem pretty o.k. from what you have described.
Kay - just wanted to comment re your SIL. We found that some people who I would have put money on being supportive and saying the right thing were just pants and it was very hurtful and eye opening. But at the same time, support and the right words came from the most unexpected places (my mother in law for one )

That's interesting nikos I have found the same. My very blunt friend has been really positive and supportive and my mum who is usually very 'me me me'has been great too.